All of a sudden the medical field cares about Chronic Fatigue Syndrome patients!!! After years of ignoring and gaslighting by the medical field, it's about time!
there's a clip from "golden girls" about the story of one of the characters developing CFS and being gaaslight by her doctors. it was known and named even back then, and still we are dealing with doctors invalidting us and providing us with no care.
Exactly! I'm 27, 13 years of chronic fatigue syndrome after mono at 14. Reoccurred with mono at 23 and around the same time got bitten by a mosquito carrying Ross River Virus... It's been even more hell-ish since then and I'm still expected to be a normal 27 year old. Gaslighting by not only the medical field, but society itself!
The worst is being called “lazy” when you were such and active, helpful person before. Clearly there is something wrong and the person is just as frustrated with being “lazy”
People are so cruel My friend told me how people always thought her "lazy " when she has struggled and had to try and work harder Just getting herself out of bed has been a chore since age 16
It is so frustrating that ppl call you lazy because ppl can't see you are sick. You hear: everybody is sometimes tired, but they don't know how it to live day and night being dead tired and having pain
It is not that we do not acknowledge it, it is rather that we have no idea what causes it so we can treat it. You cannot treat what you cannot diagnose. As far fetched as it may sound to you, we do not know everything about the human body. Not even close. And no one is going to put all of these resources for a minority of patients who present this.
@@skonstas4683 I think what the commenter was getting at is there are unfortunately many doctors and especially beaurocrats (like boards or executives in pharmaceuticals) in the medical field that have a huge ego about their knowledge and their perceived omnipotence on the medical field being the pinnacle of understanding of disease and the human body. It causes unbelievable arrogance sometimes and they do things like laugh at patients, refuse or even demonize alternative treatments or discount real symptoms. I've seen this firsthand as the son of a chiropractor which is a heavily demonized profession in the medical field despite its potential for incredible results. Doctors and surgeons just can't seem to accept that back surgery that comes with risks and a relatively high long term failure rate at treating back pain could be greatly reduced or cured with a chiropractic adjustment. They will refuse to send them to a chiropractor to even try it before surgery; ultimately hurting their patients. I've seen many patients of chiros you can even watch on youtube where they come in with failed back surgeries where their pain has worsened and theres only so much the chiro can do to help at that point since their spine has been permanently altered and fused. Its horrendous; this also goes for other alternatives like diet; nutrition deficiencies, acupuncture, etc. Anything not 'medical' could be a target for persecution or dismissal by doctors or policymakers. It is a serious problem.
@Alistair Balistair That is exactly one of the things I was getting at in my comment as well. Doctors are not educated in nutrition (I think thats intentional by big pharma corruption into the medical schools) and diet and nutrition is one of the biggest factors in healing a condition or disease the natural way. Hopefully that will change but right now its almost better to do your own research than to trust a doctor on how to deal with metabolic syndrome. I'm not knocking the medical industry or doctors here but they often have this crazy arrogance and ignorance to alternative treatments and that needs to change; those alternatives could save thousands of lives they need to learn that they aren't the only option for effective care lol.
We should be able to understand this. I have read about it and answered questions in major exams. It is weird because the pt. seems normal, almost like a trick question but we know it exists and are aware..
I hate when people tell others or me (have an autoimmune disease), it's just to get up, be active and you're just lazy. That hurts and I feel for anyone with ME CFS. It's simply heartbreaking 💔
it's pretty simple though. carnivore practically nullifies the impact any auto immune disorder has. megadose thiamine and take melatonin and u are good to go...
I chose Chronic Fatigue Syndrome (CFS) as my final year research topic, but unfortunately, my teachers and professors, who were all from the medical field, mocked and made fun of my choice. They displayed a lack of knowledge about CFS and its prevalence worldwide, which deeply upset me. Their behavior during my defense session affected my mental health, leaving a lasting impact on me. Still can't get over what they put me through. Living in a country like Pakistan, where access to primary healthcare is challenging, I find it disheartening to think that syndromes like CFS might not receive adequate attention and research, adding to my stress and concerns.
I'm so sorry, I now have ME/CFS sine 2014 and it is since 2014, when I stated studying for MSC Animal Behaviour and Welfare. I was mocked by the rest of the 16 (meateating) students AND the lecturers for my kindness towards animals and for being vegan and an animal rights advocate. I was rejected and isolated, humiliated and belittled...I feel like they broke my mind and the chronic fatigue ensued. I'm indian myself and it's not common to find veggie/vegan indians who care about animals, none of my family do, and they rejected me a long time ago for being different. Well done for standing up for us, Thank you Essa
@@kittykat8177 Thank You! You are an inspiration🦋 I know how depressing and nerve-wracking it is when you stand alone and get humiliated by a bunch of people who call themselves teachers, gurus and educators. I hope you overcome your symptoms soon! Sending Love 💕
The most frustrating things is that because you look ok.....no crutches, arm/leg in plaster, no stitches.....people dont think you are sick and often say "Just snap out of it." The exhaustion is very difficult to describe. The body aches debilitating. Just all round awful.
Yes I see that. I suffer from this too and I use a mobility scooter and people have laughed at me whilst I am on it. Because I 45 and look normal they assume I'm just on it for the fun of it. I've had comments, laughs, stares. They just add to the sadness I feel because I already am struggling to live a normal family life as it is. I dont get to spend much time with my children because I'm always so exhausted and in pain. Sometimes I try push it but end up in extreme pain and extremely exhausted for a long time. Just getting to the bathroom seems like major effort. It affects my mind and moods too
Even when I've needed a wheelchair to get around due to the severe fatigue, I had a doctor suggest I was just "anxious to walk." Uh...what?? The amount of gaslighting surrounding this illness is so ridiculous.
Yes so true! Also I was thinking how so many will and have developed mental health issues on top of this. It's so frustrating g to see help suffering and can't get help or even have the issue recognized
A big thank you to the people who chose be a part of this documentary. You're being a great part of the awareness. My wishes go to all of you who suffer. Especially my dear friend who's been affected for years. Be strong
Thank you for benig such a good friend 🙏🩷🙂. Many people (perhaps most) who are severely disabled are extremely lonely and without much positive and rewarding input.
I've suffered with fibromyalgia and chronic fatigue. I'm always stiff and tired. Headaches, pain, IBS and depression. I wouldn't wish it on anyone... horrible. Having no energy all of the time and feeling sick is just horrible!
Look into microbiome (you are more micromiome than cells) and lions main mushroom!! the Mushrooms I’m talking about are good for making cell growth in your brain. You need to meditate. Also your vagus nerve!! Yoga is good for your vagus nerve.
I say this cause after the covid virus I am diagnosed with serve asthma. I haven’t been able to work for the last 2 years and targeting the brain has been what fixing me and my gut health!!!!
Same here, Hashimoto plus low cortisol. I know how it feels when one has no energy at all, or gets tired so easily. I had to quit my job , I just couldn't work at all.
I often say that it makes me feel like “dying” and folks get real worried. 🤦🏽♀️ And then I have to explain, “NOOOO, it’s such an awful feeling that it’s not that I WANT to die, it’s almost like being alive is just too exhausting!” They don’t get it. They immediately think I’m ideating. 😂 It’s the worst feeling. And I know pain. I have Lupus, MCTD/w Polymyositis, Fibromyalgia. But, even the worst chronic pain, I can actually handle. But, it’s the fatigue that rules my life. Every aspect of my life. The kind of mom I can be, employee, friend, sister, etc. I was once so vivacious! Friends used to make fun and call me Mrs. Headly. 🤣 cause I could have 5 jobs at a time. At one point, I was doing marketing for two of my friends that were starting their own businesses, and I worked at BofA in corporate, so, I started a networking group that has a few chamber of commerce folks and everything, I still had my corporate 9-5 though, I taught music on Sat mornings, did gigs son Friday nights and Sat nights, worked w a recording studio as a studio recording artist and writer, gave voice clinics free of charge to church singers one or twice a week after work in the evenings, and soooo many other things I’m between. Still did my church thing 3 times per week, and had a social life. Now, I just work and lay around. My kids have never met the real me. That stuff hurts. But, it doesn’t mean I wanna give up. It means that I wanna fight harder.
Ja, het onbegrip van mensen is het moeilijkste…….Je praat er op een gegeven moment niet meer over. Wat je niet aan de buitenkant kan zien, bestaat gewoon niet…..heel frustrerend.
It is encouraging, isn’t it. We can hope that a biomarker can be found, so that people can get funds to help - it is a disability. But a cure would be the best!!
same here! It's too bad my doctor didn't take me seriously when I asked her about it. It was awful, I had zero energy and after coming back from class I just wanted to go to bed. It wasn't laziness, but idk it was hard to explain how my body just didn't want to do anything. It comes and goes every so often and I hate it.
I'm a biomedical researcher currently doing Multiple Sclerosis (MS) research. I learned many things from this documentary. This disease is at least 4 times more prevalent than MS! Research funding on me-cfs has to rise in the future so that more scientists are recruited to decipher this disease. Thanks for spreading awareness Love
Alison Braun's explanation of CFS about the "battery" is spot on. This is exactly how I feel with my CFS. I asked one of my sons once that when I died what kinda memory would he have of me and he said "You slept a lot". The truth always hurts and there is nothing I can do about it. Bless all those that are suffering.
I feel so bad reading this, because my kids are gonna say the same when they get older, because they say now that i already sleep alot, they 4 and 7 i hope better days are coming
When my daughter was in reception they asked the children what their Mum's were good at. My daughter said sleeping. Goodness knows what they thought. It pained me at the time but she's an adult now and we had/have long chats about her childhood and my illness and she doesn't feel she missed out at all. I was always honest with them both about how I felt and they've never known me any other way. Don't be be disheartened
@@melissarozaliaplease check your iron (ferritin) and vitamin D levels. After two deliveries you might get iron deficiency anemia due to blood losses.
I had my son in 2001 after being diagnosed in 1995. Your son will remember other things, trust me. My son remembers the days we stayed in pjs and watched old sitcoms in bed while I was too weak to move, he is grateful for all the times I pushed myself to take care of his needs because he has an understanding as an adult how this condition works having lived with me his whole life. He is thankful for the little things and will remember a mom who loved him more than anything else and who took care of him while being chronically ill with not just ME/CFS but 19 other serious conditions including constant chronic pain that never stops. I have also been a single mom since 2002 so it was really hard, there were periods where I was bedridden for over a year.
This is a real syndrome. People are not just making it up. Modern medicine doesn’t understand everything. There’s so so much that we have yet to learn about the human body and what can go wrong.
Thank you I stop going to doctor’s the they tell me that everything is in my mind that it is depression that I do not make an effort to help myself I have tried to kill myself several times because I even wonder if I put all this in my mind thanks for talking about this subject I have lost all my family and friends
I went to the doctors about my posture, I can clearly see my body is slightly twisted not really bad to affect organs but it's not good, he told be to lie on the bed and lift my knees to my chest, he asked does my back hurt in that position, I said no, he said everything's okay, that's what I pay tax for, doctors nowadays are terrible, when I was younger, the older gen doctors were great now these new ones are just robbing a wage, can't do their jobs properly, receptionists don't answer the phone, back in the day, my mum would ring up for me as soon as the doctors opened and boom you've get through straight away, fair enough may not have same day appointment but the commutation between the GP surgery and the public was great, where as now, good luck getting through, it opens at 9 i think but you'll be ringing until 10 to get an answer. Joke
@@PepsiMagt I take it you've never been ill ? Or had a close family member with a similar affliction ? Before I got fibromyalgia I would have agreed with you.
I am 70 and have had CFS with Fibro and RA for 40 years. I am now in an electric wheelchair. Even with all the misery and the denial we've all faced, the most difficult part for me has been that my family has never once mentioned either of the words, Fibromyalgia or ME/CFS. This has hurt me to the core.The exception was my mother, who was very supportive. She's been gone now for years, but she sat in the courtroom with me; I was one of the first in the country to be put on disability for Fibro. I didn't have CFS yet. I'm also a victim of the DEA's and CDC's wrongful war on opioids starting with the CDC 2016 Guidelines on Opioid Proscribing. When I had pain meds, I managed a small home, a service dog, a car, etc. Without the meds I now live in a long-term care facility, and my life has gone to the dogs! I don't mean to sound so doom and gloom; I'm not like that. But bitter? Yes.
I am so so sorry! The saddest part about it is they have done this on purpose. They give the best doctors that only care for their patients and are actually there for them the hardest time, sometimes take away their license to practice medicine all together when they have done nothing wrong, and leave all of their patients to suffer. If our so-called leaders do not want doctors to prescribe pain medication, then why have they made it a legal medication if you are going to punish everybody that prescribes it and those that have a prescription for it. It makes no sense. It's just a facade for what they are really doing. They are hoping everyone that actually needs pain medication will not be able to get it, making it so we either turn to the deadly fentanyl laced heroin on the street, or end up in so much pain that we take our own lives, either way we end up dead- and that is how they want us. It's incredibly sad. You Are Not Alone!
I understand this too well ,since having serious side effects of my ra I'm been off all pain meds since 2020 and I'm housebound, I have fibro too ,with bowel issues, (blockage & adhesions) I've just been left to get on with it if I was an animal they would be charged with cruelty
I am beginning to wonder if they don’t want us to get better. I was in ATP/glutathione injections that helped me a few years back but the US government banned the ATP injections. Why?
I think what you have is a different diagnosis. You have RA fatigue aka rheumatoid arthritis induced fatigue. RA or autoimmune disease is the direct cause. You’re prob wheelchair bound due to degeneration of ur joints and severe joint & muscle pain. The symptoms can be similar, both severely debilitating.. But there’s no identifiable cause (etymology) for CFS.
my sister has had chronic fatigue since 2015 and she was only 11 when she got diagnosed but the amount of people who judged her and criticised her, calling her "lazy" was more than too many. It was so heartbreaking watching her suffer everyday and having to explain to teachers and other people her situation but no-one really understood her even though she was in an out of hospitals all the time and was on countless medications. She had to change schools because of the lack of support she had and now she prefers to not tell anyone so she isn't judged for it. So sad that so many other people have experienced similar situations!
My husband just tells everyone we know that my asthma is really bad, then I get weird amounts of sympathy. It is bad but it doesn’t bother me. Having little energy bothers me and I need help, but what I mostly get is judgement, (hence the asthma excuse). Still, I don’t get help with the asthma excuse, I just don’t get judged.
I’m sorry for all of you suffering with this. It must be so horrible to have your pain denied, and expectations of you not realistically match your abilities. I send you empathy. I care. I hope you get good treatment and relief.
It's nice to find someone who understands, thank you!! I'm constantly having to explain how my illness makes me feel, but I feel like she doesn't even care! All she can see is me walking around with a smile on my face, but what she doesn't see is the part where I will only be able to go from my bed to the bathroom and back to bed! I also have severe anxiety, and to cope with having to leave the house, I will put a smile on my face when I go out the door, and take it off when I come back in again, much like putting on a coat or a jacket!!
I have the same condition and pretty much recover by adopting a gluten free diet❤️ I seen many specialist and none of them have an answer. Hope you can try if you have no other option.
I also have this terrible disease and am only functional for about 4 hours a day (that is with a medication that gives me a couple extra hours of vertical living). The rest of the time I must lie on my bed. It has had such a huge impact on my life. I can't work. I have to pace myself with anything requiring effort. I feel alone.
I take provigil 200mg. The generic is called modafinil which Medicare won't pay for because I take it off label so I buy it for 25to30 a month. It's not a cure but it definitely helps. Sending love. @@chelseyhurd
I can relate. I can sleep 9 11 hours and I never feel rested I always feel tired. I just always want to sleep. I’m always so tired and depressed . I just feel my life is passing me by.
I'm glad I saw your comment. I was thinking that maybe this was a severe case of depression but, I've never been severely depressed so I'm ignorant to this topic. If you're able and don't mind, can you explain the difference between the two illnesses?
I can relate to feeling paralyzed. Inside your screaming "get up, GET UP!!!" but your body just doesnt move. Sometimes my muscles flinch like they are trying but nothing. Just nothingness. It's frustrating and embarrassing
I have been diagnosed with Fibromyalgia and CFS. It effects everything and I have to deal with ignorance from people who think that just because I don't look sick I must be faking it. I have been dealing with this for 17 years. I am Canadian and I have had to fight for disability and it has caused depression and anxiety. I hope that these researchers can help.
@@dwynepen7626 Yes it would be great to be part of this research, we have never been able to figure out how I got it. But I do remember being hospitalized for a week for an infection that they could not identify at the time. I wonder 🤔
This is by far the worst of my chronic conditions. I can handle the pain, but the constant fatigue sucks every bit of joy out of your life. And no one who hasn't experienced it understands.
I am positive that I can help if you give me a chance. I am a real human with over 3 decades of experience. Please read the About section of my RUclips profile and contact me via email if you would like help.
@@etdmike I'm willing to try pretty much anything, unless it's dangerous (or super expensive, then I couldn't afford it). So yes, I'll check it out! There's not a lot of research about the issue and pretty much everyone tells you they don't know what to do...
@@awetistic5295 Trust has to be earned. I will identify a conclusive pattern of symptoms without knowing anything about you, show you exactly where the infections are located and guide you in the right direction to be "properly" tested. This will show you that there is an underlying infection causing everything. This needs to be done via email to respect privacy on both ends.
This is by far one of the worst illnesses you can have. I've had it for 11 years now. I've taken almost every psychoactive medication, seen every specialist, supplements, you name it with very very little improvement. Every single day feels like war zone, no refreshed sleep, wake up extremely tired, brain fog, have to wait for 3 hours until I'm able start talking to people, muscle pain and not only that, but now have anxiety which also led to depression. I have a masters degree and many professional certification but have to fight to do simple tasks, instead of working, exercising and living life. I really really hope the medical community comes up with something that can treat people with this illness. Feel breathless just typing this on my phone. My heart goes out to everyone who has it and has to go through it.
Actually, most people with ME/CFS are NOT depressed. There have been association studies. Most doctors are not aware. The key to improvement is to avoid all pharmaceutical drugs.
I stopped eating meat, eggs, and dairy a month ago and suddenly actually felt happy with energy. It’s like I was depressed before but not actually depressed. Probably better described as apathetic and tired.
Tobi P 0 seconds ago I was diagnosed with CFS back in 2014 after getting a flu or some type of virus. Before I got sick I was very active and ran or rock climbed every day. I came down with CFS after the flu because I didn't allow my body to recover fully. I was sick for a week, felt better on the 7th day and then ran a 10K race the day after. That evening I got sick again and felt that way for the next 1.5 years. It was the worst period of my life. No one believed I was sick and I didn't have the energy to do anything besides sleep, which I couldn't do. Even if I did manage to sleep some I would wake up just as tired and sore/aching all over. Fortunately a doctor told me that there was anecdotal evidence that resuming exercise can help. Which was super counterintuitive because I was always so tired, exercising was the last thing I waned to do. Anyway, I started a routine where I went to the climbing gym every other day and climbed/moved my body lightly for an hour. The other day I would walk and eventually jog for 30min. Eventually I was able to go longer and longer. After about 2 years I was close to where I was before I got sick. It still comes back when I experience excessive work stress or am overwhelmed but I now recognize the symptoms and know when I need to slow down but I always keep light exercise as part of my routine. For me the "cure" was resuming exercise. It wasn't an overnight fix but over the years I have had less and less symptoms.
Look into Lyme Disease, and confections like babesia and bartonella. If you’re based in the US, look for ILADS Lyme-literate doctors. It is multi-systemic and can produce symptoms of CFS.
Hoping and praying a medical breakthrough does come through the thought of getting back to somewhat of a normal life is only a dream for me right now. I miss the old me, my children miss the old me and my grandchildren have only ever known this m.e I am 45 years old with adult children, teenagers, and younger children. They all miss how mum used to be.
I was diagnosed in 2008 with CFS. When I asked the doctor what I could do for it, she told me that many of her patients go on disability. That wasn’t an option for me. I did reduce my work schedule and started taking supplements. I feel like I missed my kids’ childhoods. Always looking for extra sleep or rest, even routinely taking an hour nap at work instead of eating lunch. I started making noticeable improvements over the last 5 years. I still manage my energy expenditures like a checkbook.
@@ascend555 There is hope , Supply ur body with highly nutritious food , Avoid exercise go for walk and try brain retrraing. Keep checking every month definetly all will get better , I am sure , We are humans capable of creating all sought of complex machines , But cant find solution for our own health.
@@Turican76 No, it's not related to that, because most of that "vaccine dmg" is just conspiracy theories. For some, it's related to symptoms after they have had covid, which are now being called, "long covid".
I don’t know how to express my gratitude to dw for making this video. I felt like it gave me a voice to speak. Thanks for bringing some hope back. Millions are suffering with depression and lack of hope in life because of ME CFS
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on RUclips have the permanent cure to eradicate Shingles virus permanently.
I'm going through almost identical situations, I've been living this for 2 years, 4 months ago I started eating red meat, around almost 100% meat only, I had some improvements. I cut out all processed foods, when I cut I feel better, Because it was already possible to do something, like taking the garbage in the trash, Research the ketogenic diet, and carnivore, I'm just sharing my situation, hope it helps
I’m so glad that attention is starting to be paid to this awful illness. I’ve had it for 8 years. Most people don’t understand how painful it can be and how incredibly isolating it is to deal with something even most doctors don’t understand. I have even been laughed at by a couple of doctors. Others told me I was depressed or had some kind of mental issue. I had mono when I was 6 years old. Then when I was 28, I experienced a reactivation of the EBV and have never been the same since. I’m 36 now and have good days and bad days. On the good days I can do a small amount of exercise. On the bad days I can’t get out of bed or even pick up my phone sometimes. Everything hurts and no doctor has ever been able to tell me why. It took 6 years to get a diagnosis, after which I had already lost a career because my job required me to maintain a medical certification. My medical certification was revoked and I couldn’t work that job anymore and had to leave with student debt from the degree that I got for that job. It’s taken years to even begin to come to terms with it all and with how my body works (or doesn’t). I do what I can and hope for the best. And in the dark moments when I feel overwhelmed by emotion and despair because this illness isn’t showing signs of going away any time soon, I think of my family and friends and reach out when I can. And most importantly, I find something, anything to laugh at; even if it’s dark and twisted. Laughter, loved ones, music and my pets have gotten me through so much. When documentaries like this come out, it reminds me that there is still hope and that there are people out there who care and just need the right support to get the right research going so we can tackle this thing once and for all.
I hope we get a cure. I'm a depressed bum who feels fatigued all day, and yet, I can't imagine what it would be like to have it be 100 times worse. It's good that you understand the value of your people and the wonders they can do to your morale. My beat wishes to you.
There is always hope and todays medicine is about to be revolutionized with modern technology. Keep holding on and don't give up. Although my health issues are different from yours I find that looking after my mom who is housebound and our pets Dog and a Cat keeps me going as they very much need me. Remember, don't give up.
I don't know if this will help you, but I had CFS for over 8 years and went to many doctors and hundreds of blood tests with no results. I had headaches all day long, bones and joints were very painful, my eyes were so painful that I could barely open them, and of course the constant fatigue all day. Would sleep 14 to 16 hours with no relief. It was a local Hometic doctor that specialized in CFS who put me on over-the-counter homeotic supplements that finally and slowly brought my energy back so I could lead a halfway normal life. I still have small flare-ups that last for a week, but nothing like it was at first. No more crashes!! I wish you the best of luck, please get better.
I got really bad fatigue when I got covid and lasted about 3 months. I literally thought it was never going to go away until one day i started getting my energy back. Fatigue is a ugly thing to go through
My Dad started having medical issues in the late eighties. In 1990, he had to stop working. CFS wasn't heard of before. All doctors could do was guess and document his condition. Without a solid documented diagnosis, he could not receive disability benefits and my mom had to carry our family of 5. He tried going back to school to get a teaching certificate, but CFS can also limit your mental capabilities in the energy it takes to learn and process information. He was not able to finish. It took my parents over 10 years fighting with SSA in hearing after hearing to finally be awarded benefits. This disease has taken him from himself, his daughters, and his wife. Although he is still with us, we lost HIM 32 years ago. It's hard grieving someone when they are right in front of you. It's even harder when they grieve for what they lost themselves.
I'm so sorry to hear 😭 I've had it for over 12 years now and I know how painful it is when you have a family. May I share something with you that is helping me? I'm not healed yet, but I've found relief from symptoms. Raelan Agle (here on youtube) also had me/cfs and she healed after a decade. She's made it her life's work to interview loads of people that also healed from it. For me the latest interview with Ben Ahrens helped a lot.
So depressing to hear how little awareness and funding there is for this disease. We’ve known about it for decades and it affects so many people in such horrible ways. To be a young unwell person and just be called lazy, even by those closest to you. It’s really crushing. Sadly that is the world we live in.
@Jim Harrington it’s not a disease, it’s a syndrome. A syndrome is a collection of symptoms. You get diagnosed with chronic fatigue or fibromyalgia when doctors do all the tests. Everything comes back negative and they throw their hands up in the air. It’s a diagnosis of exclusion. I was diagnosed with fibromyalgia and chronic fatigue after years of testing positive with cytomegalovirus, so in my case there was physical evidence, however even after the antibodies went down and eight years in, I still have debilitating symptoms. “People have themselves to blame” well I can say that doing things is a hundred times more difficult than before. I used to be able to move 20 bales of straw all by myself, wrangle large sheep and cattle. I was extremely active. Throughout the onset of symptoms, I still tried to remain active. But sometimes I would try very hard, and 10 minutes in I was literally asleep on the ground… how exactly is that normal? Is that just me being lazy? Regardless I still try to lead an active life, but it’s not going so well compared to the life I had before.
UPDATE: Since January 2023 I have been mostly carnivore and my fatigue, joint pains and brain fog have all but disappered. If I slip up, I can feel some slight joint pain and feel like I need a down day but nothing like the dark days of sleeping round the clock. However, I have lost three stone on the diet and been doing heavy DIY and gardening and mucking out my horse and riding again. I all but lost my 50s but at 64 I feel better than I have done in years. > I developed ME/CFS in 2006 but it wasn't diagnosed until 2012. Quite by accident I discovered that having a mainly keotgenic diet (minimal carbohydrates) improved my condition considerably. I was literally bedbound for about 5 years but I have recovered to a point where I can manage much better - actually being able to get up and pacing mysef. It took a long time though and I couldn't predict how my condition would progress. Encouragement by others doesn't work. We have to recover or improve at our own very slow rate. Much love to all my fellow spoonies.
How's your vit D levels? I too had CFS and Fibromyalgia until I got underlying viruses in check with herbs, increased vit D and went on the autoimmune protocol diet.. Feeling much better
I got ME in 1982 and was sick for 6 years then I got a little beter. Now I am on keto for one month and my iron level is very high..dont know if I am doing the right ting. Best wishes from Amsterdam.
I do not have this diagnosis but have been sick post Meningitis from 2012 ....10 years and they thought Lupus Fibromyalgia IH Pseudo tumor... and they really don't know. This documentary was my life 100... I struggle with pacing my self....bad A good hour ..I over do it. .BED.... My 80year old neighbors out do me... Pain!!!! Sugar makes me bad .... Going to Keto!!! Any suggestions with my Drs. They don't know how to help me ... Watching Dr Berg RUclips channel I want to do his Vit D protocol for Autoimmune.... Have you done it?
@@heddysue0655 please share more!!! I am ill. I need the information on what your protocol is. Check Vit D levels and notice sugar and process foods cause more pain and The Sleep Disturbances are horrible!!!
Christine, You spoke my words. I was diagnosed in 1993...many years ago long before it was recognized in mainstream medicine, I was a critical care nurse and in my 30's back in the 1990's. I had nearly died at age 3 and at age 15 with pneumonia and after that I was never the same. I remember at age 8 I was so tired that some weekends I would sleep from Friday after school clear through to Sunday afternoon. My parents took me to the Dr. and he gave me iron. I went to university, became a nurse and had two children, but I suffered in silence and pushed through. Finally I found the Edgar Caycee clinic in Phoenix..after a full day of testing and questionnaires I got the diagnosis. Back then it wasn't an official disease but it is now thankfully. I've managed my symptoms by taking 20 supplements a day and a low carb diet, however now at age 65 I'm once again in a crash. I totally relate to what you've gone through.
Im a Canadian lady. I have suffered since I was about 32 years old. Im 58 now. Its been so horrible. My bones and muscles are killing me. Taking aĺl my strength. This is serious illness. Fatigue is awful. God bless everyone in research and suffering. Amen
I am positive that I can help if you give me a chance. CFS is a syndrome, which means there is something causing it to occur. I have over 35 years of experience. Please read the About section of my profile and contact me via email if you would like help.
This fabulous video needs to be shared by many on social media. The situation for recognition and treatment in the USA is even worse than described here. I can't begin to tell you the frustrating, life alternating impact this illness has had on me for the past 16 years. It's there every single day, even on the good days.
I agree. I was treated with IVIG for four years ..... And it saved my life. Still have symptoms, but am older and have Cancer. (X5) So I never know what is what. I just fixed myself tea and crawled back in bed.
Been living with CFS since I was 14. Used to really get to me but I have learned to cope (thank you coffee and Provigil). Their are still days when it gets hard and I've had to restructure my life greatly. I am fortunate enough to have a career in which I can financially get by on a part time basis so I am very fortunate in many ways. In the end, it remains a struggle I think I have just gotten so used to this being my "normal."
@@-willow-980 God I know it.! I don't understand. When I started IVIG the 30 grams cost 8000. My insurance paid. Within 4 years it went up to 20,000 Now up to 40,000 a dose. It is completely crazy. I swear it helped me survive brain cancer. Now growths on my spinal column is back but I cannot get the treatment that worked for me. It was like liquid gold.....
Thank you for this video! I am a 62-year-old Canadian living with ME/CFS, Fibromyalgia, Giant Ganglion cysts, and drug sensitivities for 40 years, and have just been rejected for the 3rd time from receiving ODSP support (disability funding). All these testimonies are so validating to my condition... I pray for more research, if not in time to relieve me from these debilitating symptoms, at least for those younger than myself suffering...
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Joanne I am in Ontario and I have been able to get my ODSP. But you are right it is a huge fight and they made me reapply every two years but last year I was able to get it permanently. It is hard to fight when you have no energy and I think they rely on that sometimes.
@Tamera L Yes... I think now I am too close to 65, and by the time I go through the whole process of applying and gathering more medical support, I'll be getting Canada Pension... It's crazy... I have to live on 476/mth right now (ON Works) until then... Glad you were able to get it - mostly, I hope your health improves xo Take care xo
My father had CFS back in the early 90s. No doctors believed him. He had chronic insomnia and terrible headaches in addition to crippling fatigue. He died in 1995 at 45 due to pneumonia, but I'm convinced the chronic exhaustion contributed to his death at a young age.
@@shellbell313 Well, you can either miss him for the rest of your life or get over it, process the emotions and then you can live your own life, the way he would've wanted you to.
I developed CFS bc of having fibromyalgia. Fibro messes with your melatonin production, causing insomnia. And I saw someone mention the new opiod guidelines. Imagine being in pain, in spite of taking 200mg of Tramadol each day. My 'pain mgmt' team refuses to up the dosage, even when I'm in severe pain. They kept upping the Gabapentin instead, which has never helped my pain at all. So, a couple months ago, I told them I was no longer going to pay for an Rx that did nothing. I've started using THC gummies, which don't always stop the pain, but they do leave me feeling somewhat detached from the body, so my pain is not so immediate. I've also learned to keep my mind busy, so I don't focus on it. I read, play games & watch videos. I've not been able to work since 1998, I need to lay down often during the day. On top of fibro,, I have osteoarthritis in my neck, hip, back & knees, plus spinal stenosis & both bulging & collapsed discs in my back. The chiropractor is afraid to treat me. I tried acupuncture, but they could only see me one - two times a month & the struggle to get dressed & go out to the clinic wasn't worth the one or two days the treatment helped somewhat alleviate the pain. The whole thing is a nightmare where I'm always exhausted & hurting!
Thank you for making this. As someone who struggles with this syndrome so much more education for doctors and the public. Also there is not enough research and funding.
Like many auto immune disorders it is important to decrease inflammation in the body. I dont know if anybody has tried this, but the best to do that is by eating low carb or even better carnivore with added supplements controlled by blood work. Vitamin d3 in high doses is important, because sufferers stay mostly in bed and dont get enough sun. They have to eliminate inflammatory foods like seed oils high in omega 6, gluten and most dairy. It takes time, but there should be improvements after a year. Dont expect the doctors to find a magic pill that cures you and then you are 5 years on without a solution. You can start yourself and it doesnt cost much. Many people with autoimmune disease get better.
I have fibromyalgia ,very severe and chronic fatigue for 40 long years! The pain,dépression,not to have a life is heartbreaking! It’s affect the family life and friends,,devastating! 😢😢😢😢😢😢😢😢
I found out in 2022 I have fibromyalgia. I had chronic fatigue and never felt recharged. I would be falling asleep as I walked around or talked with others. I became depressed because I was sleeping my life away. I'm always worried it will come back. When I nap I have a hard time with pushing myself to get up. My Dr said to fight the fatigue.
@@tiffdoodles fybromyalgia I've found can be a symptom of me where is your pain? All over or spots? Check for hypomobility heds and sleep apnea it's also linked to autism ADHD for which ime diagnosed late 43 I do reccomend d ribbose 27 years cfs 6 years fybromyalgia my father had CFS recovered now just list my mum.hes starting CFS again 74
I've had ME/CFS most of my life, labelled lazy, a hypochondriac and a hysterical female of a certain age, until 2016 when a new GP said, " but you have Chronic Fatigue Syndrome, so these things are expected. " Until then, I had no knowledge of the condition. I just thought everyone else was right. NOW I've learned so much about why my body reacts as it does.
I’m so sorry you had to go through that. It’s a cruel disease. I’m clad they are calling it a disease in this documentary. The invalidation around this has been almost as bad as the disease itself. Wishing you health and peace
“Hysterical female” yes medical sexism is such an issue with these conditions! Fibromyalgia affects mostly women. Estrogen has been linked to pain sensitivity. There is a physiological cause for all of this, doctors need to learn!
My younger sister has had ME/CFS for over three years now. It took nearly a year for her to get a diagnosis. In 2020 she had a bad fall and concussion which made all of her progress disappear and even make some symptoms worse. She developed severe light and sound sensitivities which are still present today. Whereas she used to be able to watch youtube, read a book, or listen to music, now she can hardly go outside without sunglasses or noise-cancelling headphones. She has been going through treatments that have helped make progress, albeit extremely slowly-and though we don't think she'll be back to her old self, we are hopeful that she can improve. Throughout this experience I've been away at college and unable to visit until recently due to covid restrictions. I understood somewhat what she was going through-but this documentary definitely helped me get a better insight into how she feels internally. Thanks so much for making this and raising awareness, hopefully with the new rise of long-covid, ME/CFS will become far more recognized and researched.
Many people unfortunately are misdiagnosed or diagnosed with CFS where the doctors completely miss or are not aware of the actual cause which is cranio cervical instability, the best way to diagnose it is via digital motion xray or a DMX Craniocervical Instability is a medical condition characterized by injury and instability of the ligaments that hold your head onto the neck. Common symptoms of Cranial Cervical Instability include a painful, heavy head, headache, rapid heart rate, brain fog, neck pain, visual problems, dizziness, and chronic fatigue. Chronic Fatigue - A Symptom of CCI, AAI, & Upper Cervical ... centenoschultz.com/symptom/chronic-fatigue/#:~:text=Craniocervical%20Instability%20is%20a%20medical,%2C%20dizziness%2C%20and%20chronic%20fatigue.
Hey Ben, look into Lyme Disease, and coinfections like babesia and bartonella. It is a multi-systemic disease that attacks different parts of the body and mimics symptoms of CFS, carditis, rheumatoid arthritis, multiple chemical sensitivities, fibromyalgia, optic neuritis etc. There is a documentary called “Under Our Skin”, also look into ILADS Lyme-literate doctors if you’re based in the U.S. The more you research the more you’ll come across extensive treatment plans and lifestyle changes: like detoxing mold and heavy metals, herbal medicine (antibiotics are highly discouraged and only necessary in severe acute conditions), killing parasites, reducing chemical and EMF exposure, together with improving diet, improving microbiome with probiotics, bee venom therapy. Ask your sister to go with her own intuition and trust in her judgement as she explore these options and create a unique treatment plan for herself. Glad she has a supportive brother speaking up for her here. All the best!! And I hope she recovers and thrives again!
First of all, let me say that Chronic Fatigue Syndrome is not a rare disorder. It’s just very frustratingly misunderstood and undermined. I happen to have Myalgic Encephalomyelitis, which is pretty much the scientific name for this debilitating disorder. And it is a terrible disorder to have. Doctors tell you that it’s just fatigue, and that exercise will help. But it doesn’t at all. It will pretty much always make you worse. I now use a wheelchair full time, and require full time care. Even my caregivers don’t understand my needs and the fact that I need so much help. I’m glad this video has been made
@@janeteddddd - if someone took vitamin D and it helped they didn't have ME, they simply had low vitamin D levels. ME or CFS is a diagnosis of elimination as there's no test for either so blood tests are always taken as the first part of the diagnostic process.
My dad was diagnosed at 17 with me/cfs and it's still a struggle but when I was around 15 I started to develop very very similar symptoms to my dad and kept worsening. I was later diagnosed with eds (a genetic connective disorder) and various forms of autonomic dysfunction. All three of those conditions have such little research or support. It'll always be in the back of head of if my dad has EDS+dysautonomia or if it's just a coincidence that we both have such similar experiences. We desperately need more resources and for those who aren't diagnosed, so many people out there suffering behind closed doors with no accessible support. We need more research. This condition can lead to such an isolated life with a financial strain and leads to mental health issues because we get left behind . The people in this video are so so lucky to find such passionate doctors , very few do.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms. MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM. Mast cells are found in all tissues of the body, including the brain. The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive. Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators. The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body. Many of these mediators are inflammatory, others control bodily functions and growth. Those with MCAS should avoid all their triggers as they can make them worse. Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals. There are many different medications that can make most people with MCAS better. Some diseases that are often associated with MCAS. • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) • Post-Lyme syndrome • Long Covid • Post-traumatic stress disorder (PTSD) • Gulf War Illness (GWI) • Irritable bowel syndrome (IBS) • Fibromyalgia syndrome (FMS) • Postural orthostatic tachycardia syndrome (POTS) • Multiple chemical sensitivity syndrome (MCSS) • Interstitial cystitis/bladder pain syndrome (IC/BPS) • Attention-Deficit / Hyperactivity Disorder (ADHD) • Autism spectrum disorder (ASD) • Neurologic and psychiatric symptoms and diseases Scientific articles NCBI • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Mast cell activation symptoms are prevalent in Long-COVID • Immunological dysfunction and mast cell activation syndrome in long COVID • Mast Cells and Irritable Bowel Syndrome (IBS) • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • Mast Cells, Stress, Fear and Autism Spectrum Disorder • The role of mast cells in migraine pathophysiology - PubMed • Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin • Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)? • LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS • Mast Cell Activation Syndrome: An Alert to Psychiatrists
I've had CFS and fibromyalgia for 35yrs. People are not understanding and expect you to be able to at least do this or do that, they can not possibly imagine what I'm going through. I got Mono, EBV, and haven't been the same since. I was a hyperactive workaholic, until this happened, and it ruined my life.
I am so sorry to hear you had CFS. You may want to refer to Dr Emoto on water experiment. The research may lead to the answer to cure CFS. You can find out more details in RUclips.
Those things could all be related to the heavy metals and other toxins in childhood vaccines that our bodies cannot truly ever fully get rid of, eventually it starts negatively affecting more and more systems, up to and including the brain. A lot of what is being called genetic disorders are actually just genetic or circumstance differences of people’s ability to detox or safely store (in fat) the toxic injected substances most of us encountered but had no idea was so nasty.
People keep saying the worst bit is we don’t look Ill. yes we do, we look tired and haggard. I used to look healthy. People keep saying there’s no way of testing it? What about those of us who were sporty before and have been wearing a fitness watch for years. The numbers are crystal clear. Just because medical professionals can’t find the cause doesn’t mean it’s not there. A fine example of incredible arrogance from the medical profession.
I used to be a long distance runner, now have CFS that gradually came in over 6 ish years and can barely walk without feeling like im gonna pass out from fatigue. Did you have a smart watch pre and post CFS? If so what differences did you see ? I'm interested.
hi, @ratgreen I’m sorry you have been living with this. Mine came on gradually over the years too. I was diagnosed last year after a virus. Yes I have had a smart watch pre and post CFS. I get chronic neck pain too. My tracker whilst having CFS shows high stress during sleep. Higher resting heart rate. Decreased VO2 max (although would decrease anyway with stopping training). I slept 15-16 hours per day. Sometimes for days at a time I wouldn’t get up. Unrestorative sleep. Low HRV Higher breathing rate during rest. Pre CFS I was considered to have a fitness age 6 years younger than my actual age. I know they’re not considered accurate in medical terms but they’re consistent in their inaccuracy. I have improved a little by pacing and keeping a diary of everything over nine months and changing things that I see as triggers. Each day track Pain level Sleep Body battery/energy level Food Water intake Mood Stress factors Meditate Patterns will emerge. Find a medical professional who will support you. Do not listen to negativity. Don’t lose hope. When we know nothing we need to know everything.
@@lucyilly428you are a fighter❤ I too am suffering in silence . I have kids and am a single mom. I’ve thought about ending it… but my kids have saved me from giving in. I am slowly getting better… but then I feel myself regressing . It’s soooo frustrating. May God help us all.
@@lucyilly428 what do you feel helps ? I try to exercise but then I feel tired for days afterwards . I used to work twelve hour shifts before and feel fine… any advice?
Thank you so much for bringing this up. The medical community is so unaware of this, and most practitioners, even in the developed countries ignore patients with ME-CFS as malingering!
@@v.prestorpnrcrtlcrt2096 looking at your other comments you say nothing positive mate. Do you speak for anyone of note? Maybe take a break from the screens, take some deep breaths mate. Come back more positive. A more useful member of the RUclips community. This disease is far more brutal than your words could ever be, I promise you that. Maybe try supporting those worse off than yourself instead of conjuring false flag arguments against total strangers.. 🤷🏼♂️
@@delmarchipperson2049 yeah they have a serious expression on their face when they listen to me but I’m yet to meet one that says “I can help” ..and can actually help. Graduated exercise is not the solution. What’s your solution?
How dare a doctor assume that a thick medical file is indicative of the source of illness being psychiatric. That is an outrage. So-called doctors like that should lose their licenses. They're not even practicing medicine. They are practicing avoidance of learning about what's really going on with people. That's heartbreaking to hear.
@s s a lot of doctors are very lazy. They don't actually want to do the work to figure out how to help someone, so they'll just sum it up to psychiatry. Lame. No excuse for that. Some people do have less healthy bodies than others. Fact. The doctor who wants to sum it up to psychiatry rather than try and understand the patient and the complaints should not be in medicine.
One of my kids had a thick medical file, along with a legitimate diagnosis, migraines. It took a long time to find the right combination of meds. I can't imagine what it must be like when doctors don't try to help. I hope that changes soon, for everyone's sake.
@s s that’s an excuse. Scientists are finding out a lot of ‘crazy’ is actually caused by inflammation. (I.e. it’s a physical malady not ‘mental’). It’s a cop out by ANY doctor to assume ‘’psyche’’ and pass the buck, at least without doing in-depth search.
@s s some people are for sure. But they are doctors out there who if they don't know something they assume the person is crazy. These people should not be called physicians, they are a joke.
I had this disease as a teen and it changed the course of my life. It was very traumatic tbh. I feel like the medical professionals thought I was crazy.
I was diagnosed two years ago when I was fourteen. It is devastating to young people. I only have one friend and rarely talk to people. It’s a cruel disease that isolates it’s victims and leaves them unbearably lonely. I’m so grateful for my mum, if I didn’t have her, I’d probably give up.
It's so sad to see. I was diagnosed with MS not too long ago and I know what fatigute and simultaneous pain feel like. It's near impossible to describe the impact it has on wellbeing and mental health, meaning people will, sometimes unknowingly, put a lot of pressure on you in daily life. Keeping a job has been a challenge, it's a struggle every day and sometimes even healthcare professionals will dismiss concerns - a cold for someone with chronic illness isn't the same as a cold for someone who's otherwise perfectly healthy, for example. I really hope that ME/CFS will be better understood sooner rather than later so that everyone affected can get the help and support they need.
Wow! Thanks to the guy, who bring this illness to the world stage. Our fellow human beings, who are considered healthy, will never understand anything in relation to this illness, cause they are not living on a low battery supply. All i can add, is my people suffering with this illness, you are not alone, even though i am suffering with thyroid, just enjoy life with the little battery you have left. God bless & love you all.
I remember seeing this video last year, but thank you for uploading it again. Our suffering must not continued to be ignored. We need all the help we can get.
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I was diagnosed with both chronic fatigue immunodeficiency syndrome and fibromyalgia in 2001, when I was 31. I have had to just deal with the unrelenting, pervasive, constant pain of the fibromyalgia since then. The unrelenting exhaustion of the CFIDS has been, by far, harder to deal with. The most frustrating part has been trying to work. None of my employers have been sympathetic or supportive. None of them have allowed me to work mostly at home, even though it's doable in my profession. It's definitely hurt my ability to further my career. Thank you for making this film and bringing attention to this horrible, and horribly misunderstood, condition.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms. MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM. Mast cells are found in all tissues of the body, including the brain. The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive. Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators. The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body. Many of these mediators are inflammatory, others control bodily functions and growth. . Those with MCAS should avoid all their triggers as they can make them worse. Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals. There are many different medications that can make most people with MCAS better. Some diseases that are often associated with MCAS. • Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) • Post-Lyme syndrome • Long Covid • Post-traumatic stress disorder (PTSD) • Gulf War Illness (GWI) • Irritable bowel syndrome (IBS) • Fibromyalgia syndrome (FMS) • Postural orthostatic tachycardia syndrome (POTS) • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Multiple chemical sensitivity syndrome (MCSS) • Interstitial cystitis/bladder pain syndrome (IC/BPS) • Attention-Deficit / Hyperactivity Disorder (ADHD) • Autism spectrum disorder (ASD) Scientific articles NCBI • Mast cell activation symptoms are prevalent in Long-COVID • Immunological dysfunction and mast cell activation syndrome in long COVID • Mast Cells and Irritable Bowel Syndrome (IBS) • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • Mast Cells, Stress, Fear and Autism Spectrum Disorder • The role of mast cells in migraine pathophysiology - PubMed • Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin • Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)? • LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
I was diagnosed with Me nearly 15 years ago then was diagnosed with Fibromyalgia as well 5 years later. The last 10 years have been hell being told 'i'm lazy' and 'its all in my head' on a daily basis. Wishing you could do basic tasks but being unable to is one of the worst feelings there is. My wish is that all people who have ME have more good days than bad and receive the support we need. Hopefully documentaries like this will help people to understand more about the condition and will lead to more discoveries to help.
I've had ME/CFS for 6 years. Life has drastically changed but I've learnt to pace, mostly. It's hard to accept; takes time. Thankyou to all involved with this great documentary ❤🎉
Love your name, Havok ! 😘 If you would like some help to heal, please read some of the other posts we’ve made. But, in a nutshell, eat well (organic), boil water, exercise as much as possible (without relapsing) and with sweating, and avoid all pharmaceutical medications! In most cases, the diagnosis is ‘poisoning’ by drugs. Now, you can move on and start the healing process.
My mom has this illness.... it's really terrible. She had to change all of her life, all of us had to move out to apartments near by because living together was too much sensory input on her. She has been having constant feverlike symptoms for 4 years now. At least she has been able to get our of bed after 2 years of constant darkness and lying down in bed with closed doors, closed windows. Now she is able to eat with us sometimes outside of her bed. She can sit in the living room. You can't imagine how grave this illness is. and when you live with a familymember with it, you completly forget what a normal life is. When I see old pictures from a few years back where my mom stands in the living room watching a TV, it feels like watching another person. My mom would never be able to do that anymore - she wouldn't be able to stand up, nor would she be able to watch tv. When she watches TV she gets dizy and tired right away, burning headaches and so on. At least things have been slowly been going the right way. I hope that in 10 years maybe she will be somewhat able to be independent. I know how much she hates to rely on other people.
I started getting unwell in my thirties after two operations. Never been well since, I’m nearing middle 60’s now! It’s the fever’s & sweats & constantly hot 🥵 & cold 🥶 & it’s lonely.
@@florence1395 god I'm so sorry for you :( I'm sure you've tried B12 shots, but in case you haven't they have helped to reduce severe symptoms for my mom. She also turned out to be very sensitive to plastic so switching out bedsheets and so on to pure cotton has also seemed to have somewhat of a result. Though we can't tell if it's a "cause-result" situation or just a coincidence...... I hope you have found some things that help you through the day!
Don't need to take 10 years. I have almost cured my ME, low thyroid function, seasonal allergies, bone and muscle pain, skin conditions, blood sugar issues, hair loss, tooth pain, mental issues, etc, etc with diet, fasting and vitamin supplements. Eat clean, mostly fresh plants. Fast regularly. Take high doses vitamin D3 (30000 IU pr day) with K2, magnesium and zink. Take sunbath without sunscreen. You should also check out your B12 level. I am 50 years old women and feel better than i have in almost 20 years. Do your own research, don't trust doctors and take as few medicine as you can, it's poison. Take a daily green smoothie with flaxseed and the vitamins and you will soon feel much better. If you have bone and muscle pain, you will probably feel worse before better, it's healing pain.
@@i.b.168 🗣 Yes, YEs, YES !!! Another sensible, person here people. This advice includes many of the answers to FIXING (not masking) your ME / CFS health problems !!! Follow this advice, it provides the only way out. ONLY people like I. B. can help you. 🥳 🤗 🤗 Raw lemon, and boiled water, as often as you feel comfortable. And you must move (exercise, and sweat). It helps to get the toxins out of your bodies. (Just do not over do the exercise).
I told an MD that I felt like 'a frail old lady' a few years. back. After a serious medical issue, my symptoms got even worse! Today, I'm having a severe episode, and I'm. mainly housebound, and require a caregiver! It's very uncanny that I found this documentary because these patients are presenting with SO many of my symptoms! It's tragic that this has happened to millions of people just like me.
Drink a sea moss smoothie, the effects are almost instant...the developed world has everything a kings plate 🍽️ could dream of but if you get a microbiologist involved they will determine nutritional deficiency and the vitamin pills go right out, ask honey scoopers, they find a lot of vitamin supplements from porta potties. Sea moss has 92 of the 105 minerals the body needs... combined with spirulina you get even amino acids. Fatigue is multiple things but if you can replenish trace minerals, you can live longer... alkalinity is the source of health
I tell people that I feel like 78 years old. It feels like a serious virus, just after the fever where ur aching all over, and no energy to do anything but breathe
Have you been tested for polymyalgia rheumatica it causes severe fatigue body aches, frailty, a friend had this and it took months to diagnose, he went from a very active person to someone who seemed to age 30 years
I had a liver disease and experinced extreme fatigue for a while. That was the only time when i really thought i was dying. My body was just barely holding on and i'm extremely sorry for those who have it as a chronic case😕
Thank you! I’ve been told by so many doctors that it’s all in my head because none of the regular tests show anything. But after I got mono as a healthy teenager, I became a completely different person with multiple debilitating symptoms. Seeing this documentary makes my heart shout YES, I KNEW IT! Thank you so much.
@@LisaTrusty find out the antibiotic u took then Research ::: F.Q.A.D ( FLORAQUINILONE toxicity syndrome ) this type of drug has been killing 😳 since the 60 ,s UNDER THE NAME HYDROCLORAQUINE THEY JUST CHANGE THE NAMES AND REINTRODUCE IT AT A LATER DATE... they have done this for many years now ...... each time it is pushed to the people it seems to bring on MORE AND MORE MYSTERY ILLNESSES OVER THE COARSE OF TIME? ⏲ THAT go unsolved ? and we are to just ROLLOVERER and BELIEVE everything they say ,, 🤥 NOT ACCEPTABLE. !!!!
It was something mono-like for me too. There was at the time a breakout of mono in my high school. I got sick as well, same symptoms, but my test for mono came out negative. I never really went back to normal, though it took years for it to get worse. College drop-out. One of the best schools in the nation for my major and won a grant from the school too. I could not even walk to class, or walk back if I ever got there, so I had to leave. I’ve never been able to integrate back into ‘normal’ life since. That was more than 20 years ago. I have some better years and some very bad years. It never goes away and effects everything. I hate it.
'My neighbors thought I had moved away' - this one got me. My neighbors thought I had been abroad with family for long stretches. I was right here. This was after a lifetime of having been a very active, very committed to community lifestyle. Now I have long covid and the two definitely overlap in some ways. One of the most difficult aspects has always been the general ignorance and lack of acceptance of ME/CFS even being real. (Seen as an attitude issue or depression, hypochondria etc). 'You look well, you must be well' . 'Get a new hobby, cheer up, try more exercise, you just need to get out more' etc. Covid is helping with this dismissal issue some. Now there can be a bit more recognition and validation as dealing with a real illness among some, or at least perhaps not as strong or as immediate an invalidation. But still not that much. So one must deal with a societal kind of dismissal or shunning on top of the pain, weakness, fatigue, brain fog itself. All that adds to isolation. It requires the cultivation of real inner strength to live with this, manage the necessary adjustments to impairment and still live well with tranquility and happiness.
I have prolonged Covid last year. I still very sluggish most of the time. I would rather sleep. But whenever I ask my doctor he would just look at me like I am the laziest person in the world and ask me , "Your Covid was last year, what is your excuse?"
Yes, this is a great documentary. I've also had ME/CFS since 2008. I was diagnosed at UCLA in 2009. Since 2008, I've never been able to work full time. However, I was able to find and practice a form of qigong that improved my health considerably and gave me back enough energy so I could at least work 3 hours a day. I had severe ME/CFS for 16 months at the start of my illness, but it's been mild to moderate for the last 11 years or so.
This documentary suggested by RUclips at the right time... I've been having this for years. I'm still functioning, but the fatigue just sooo overwhelming and can't be explained.
This video is an incredible resource, thank you so much. I’ve been dealing with this weird condition for years. Doctors dismissing patients is so infuriating. If you don’t know something, that is understandable. But to try to gaslight a patient that is already struggling so much is horrid. Sending love to everyone out there who is dealing with this.
As someone who has an important person in their life who has CFS, it is also a struggle for us. We feel helpless when theyre having a really hard day. I hope future research will bring more knowledge, understanding, and potentially cure for this illness. 🙏 I just want them to have a normal day without feeling every movement is a pain.
Yes. It’s lonely for you, too. Because you want so much to make it all better. Bless you and your loved one for taking the high ground and hoping for treatment. Hang in there. You’re not alone.
It is most likely a childhood vaxx injury and the treatment you’ll want to find is for detoxing heavy metals. CFS is listed on many vaccine package inserts as a possible side effect, I posit that it’s quite a common one, I even had a formal diagnosis for it from my family doc in the 1990’s.
Sadly, the ones willing to really listen to us are only the ones who also suffer from CFS. I have been suffering from CFS for over 30 years. Thank you to all who have shared your experiences here. I hear you, I feel your pain & suffering from my own daily personal experiences. May God bless you.
This was very eye opening. I was diagnosed with me/cfs by the Mayo Clinic 4 years ago. I got mono when I was 17. I was a high school basketball player who also did 2 hours of yoga a day before I got sick. It’s been over a decade now and my life has fallen to pieces. I have many health issues and am now disabled at only 27. My dreams all have crashed down before me. I’ve fought with the cfs diagnosis because of how doctors treated it like it was psychosomatic. I now realize it may be a bigger contributor than I give it credit for. I’ll wait anxiously to see where they go with research and I’ll hope for days when I can move well again!
Thank you for making a documentary on this! I have watched your documentaries for years, and am also a sufferer of CFS. I am so glad to see more word spread about this illness.
I got chronic fatigue plus orthostatic intolerance from abusing caffeine of all things. I went on 4 hours of sleep or less for 2 years because caffeine made me feel alert enough to function, and I thought I could ride that wave forever. My body basically flipped me off and conked out and as a result I was basically bedridden for 2 years. It's important to treat your body right and give your body proper rest and not abuse caffeine. Caffeine addiction is insidious. I quit all caffeine for 2 years and sleep off all the sleep debt I collected throughout those years and started feeling better actually not too long after I quit, about 4-6 months in I started feeling a difference. I feel for people who have chronic fatigue. Feeling so weak that you can't even sit up on a chair for more than a few minutes, it's miserable. Made me realize the smallest things I took for granted. I hope all of them find an answer and can eventually fix their CFS.
ive had cfs since i was 10 (i am now 15) and im so glad that these days more people are becoming aware of this illness and doctors are taking it seriously now. my grandmother also had cfs, when she was in her 20s, and since at that time nobody knew what it was she never got the help she needed. my heart goes out to everyone who is struggling, and know youre not alone ♥
My fibromyalgia is hereditary, all the women on my moms side have it. It’s sad to think that everyone else suffered with less medical care, but in the end the only things that have worked effectively have been maintaining a healthy weight, exercise and avoiding foods that seem to make us sick.
I've had ME/CFS since 2014, although I had no idea what I was suffering from until my own research led me to the condition in in 2018. I was finally diagnosed last year in 2021. Thank you for this documentary. I'm only ten minutes in, but my eyes are tearing up -- I'm so touched that our stories are being told and heard. Thank you. I'm in my early 30's and housebound, dependent on my partner, and hopeful for healing. Thank you again for creating this, it means so much.
@s s lol. thanks so much, never thought of that, i'll just get to the gym stat then. (*sarcasm alert*). In all seriousness though, this misunderstanding is so common. There is something physically wrong in people with ME/CFS (did you watch the documentary?), it is not psychosomatic even though we don't look sick. Most of us do try to exercise before we know we're ill, and that ironically is what makes our illness worse. I did that for years and my health slowly deteriorated until I became housebound and found out what was going on. I think this is so hard for people to understand because for most people exercise is the answer and does help. It just really really really does NOT help those of us with ME/CFS because we have exertion intolerance - post-exertional malaise. If it was as easy as "fighting it" and "working out", no one would be suffering from this awful illness. It's much harder to learn to be in tune with your body so as to allow it the space and time to heal and rest. People with ME/CFS who do that (i.e. who stay within their energy envelope) generally may have their health improve or at least not get worse. It's really hard though because society's mindset is to FIGHT and PUSH and that's exactly what one has to unlearn to have any chance of living with this without extreme suffering or even possibly recovering from ME/CFS one day.
@s s Most sufferers try this approach. Some manage to make it work, but it takes months to years of falling back into illness If you are not too damaged by the drugs (the pharmaceutical drugs), you may just be able to recover some of your previous abilities.
I have the same condition and pretty much recover by adopting a gluten free diet❤️ I seen many specialist and none of them have an answer. Hope you can try if you have no other option.
I am 63. 25+ years....this has been my life/existence!!! Beyond horrifying.yes suicidal thoughts are frequent. 🙏 For cure and understanding. God bless and help us all 💜🙏✨
Oh my gosh, I am so glad I found this. I’ve been struggling for years. There is no diagnosis or any help. I’m very grateful for this video because it makes me feel less alone. Though I wouldn’t wish this on anyone.
Thanks so much for this documentary. I hope a lot of doctors, scientists, and politicians are watching this too! There are a lot of us suffering and getting little to no help at all! Thanks again!
If there is one good thing about Covid, its the medical people finally realizing and doing more about these chronic conditions. Sad, but true that it takes a pandemic and tons more than the usual amount of people developing chronic fatigue and fibromyaliga.
I have CFS/fibromyalgia. This is extremely accurate. Today is one of those days. I can barely move. My bones hurts, I can never fully recharge my batteries.
I had post viral fatigue after covid which lasted about eight months. It made me realize what people are up against. I recovered but I do feel nervous in case I get a virus again and the same terrible exhaustion returns. My case was mild. I really feel for these people.
What is being called a mysterious "disease" is actually the fact that we are alkaline beings. We must stay at a constant 7.2 to 7.4 pH. Our super INTELLIGENT bodies regulate us at this constant pH. That is because we consist of 7 billion billion billion atoms, each one an electrical energy field because atoms spin/vibrate as positive and negative protons and electrons. We are electrical beings. Look up all the youtube videos and books that say so. Many doctors know this. Watch youtube videos by Dr. Young. Read his book The pH Miracle. Since we ARE electrical beings, then any dis-ease is electrical. 5G and microwaves hurt us. Our own bodies are the energy of 7.2 to 7.4 pH. Food is measured electrically as pH. We must eat foods that are the same pH that we are. That means eating lots of greens. Tomatoes, etc. Exercise burns up this energy so that a person could eat more acidic foods and not be hurt. Diabetes is eating too many acidic foods and not burning them off with exercise. So this acid just sits in our bodies as fat. Sometimes acidic foods show symptoms like mucus, colds, fevers, heart attacks, diabetes, etc. Dr. Young says ALL elements can be fixed by eating alkaline foods.
@@lotus___freedom Lol come on now; I am on your side in that the media and the creation of covid itself is a manipulation and they are lying about the real reasons it came about as well as the effectiveness of vaccines. However, even though its a man-made bioweapon intentionally unleashed upon us it is still a real virus; I've had it myself multiple times since I seem to have a weakness to it. Just because the creation of the virus, the overreaching government response to it and the media manipulation are all true doesn't mean the virus doesn't exist and has real consequences if you get it.
My partner Jessica has been living with this since she was 14. She’s 28 and watching this just makes my heart hurt even more. I’m devoted to my partner and looking after her but I just wish that one day we can find some way to solve this. Chronic fatigue is devastating and while she has come to terms with it and does the best she can I can still see the pain it brings her. I hope we one day find a cure or even a way to improve recovery because living with this must feel like a death sentence for a lot of people :/
Adding insult to injury with CFS and similar are people who reply like the other two here, being wholly dismissive and providing zero scientific studies as reference. I have a chronic condition after an injury in the Marines, and I’ve lived with it since 2006. It is awful, and I used to need a cane. What has helped me is as follows. 1. Accepting that my body is not the same, it won’t be the same, and figuring out how to navigate life this way. Example: I used to be very physically fit and active, and cannot exercise like I used to, so I had to find different ways to exercise. Truth be told, I’m fitter and more active than my peers but it’s nothing compared to my old body. I had to let that go and accept what I can do as I am. 2. Find a good regimen of medication and supplements. I was able to stop using a cane with the right painkillers, and we got me on the lowest dose that is effective for me, spread out all day rather than a larger dose once a day. I read scientific articles about my issues, such as the accompanying chronic migraines, and how things like magnesium and ginger can help so they are taken in addition to my prescription. Pay attention to dose in the research articles, and also the type. For example, you may find that Supplement X is often sold as a “whole leaf” variety, but the study was using the “extract” version of Supplement X, so be sure to try the right format. 3. Being easier on myself for doing things like taking the elevator instead of the stairs, for setting a main goal + auxiliary goals rather than an all-must-be-done-today to-do list. I channel my “go go go get it done go go go” mentality/personality into my work rather than having it apply to all parts of my life like before. 4. Check back with docs and specialists, especially for updates about the condition and their ideas about compounding factors. I found myself super tired and losing my hair and having my lymph nodes swell up, and I was concerned this was cancer as I’m at a higher risk (due to where I was stationed in the Marines) and had to have tumors removed before. I hated this because I was already fatigued anyway, already in pain, and now I’m even more tired and achy? It turns out I also have an autoimmune disorder and I had become iron + B12 anemic. Once I started working on the iron and B12, I went back to “normal” (not “true normal” but “my normal”). So it wasn’t that my underlying condition was worsening, it just felt worse because other stuff was happening. When you have a chronic condition that a lot of people don’t understand, you tend to blame every new symptom on the condition to avoid going to the doctor and going through the annoying procedures. But in this case, it was really helpful so I recommend keeping this in mind. 5. Keep on top of my health. Similar to point four, I eat healthily, keep my weight in a healthy range, and do daily exercises. This can’t cure what’s wrong with me, of course, but it helps prevent ADDITIONAL problems from building up. Obviously it isn’t perfect (see above point), but at least it is helpful. As I said earlier, on paper I’m actually fitter than my peers. I joke that I’m the weakest strong person that you’ll ever meet. 6. Find something worth living for, that you can also take a break from if needed. This might be dark but it’s hard to want to keep living when you have a body like this you start wondering what the point of living is. For me, I love teaching and I’m able to do things like sit and teach, keep the lights off in my classroom (helps migraines), and my students are good about keeping quiet/attentive when I have to speak more quietly on bad days. I love what I do so even on my worst days I still get animated and into my lessons despite the pain and fatigue. I also have a RUclips channel and it helps me connect with people. The channel isn’t big but it is a fun hobby for me and I enjoy meeting new people. Speaking of, your partner can feel free to contact me on Discord at DoubleEspresso#9310 (you may as well if you have follow-up questions about this, as I don’t always check YT comments). I also decided to go back to school to get my Master’s in Psychology. I’m only taking one course per term and I am really enjoying it! All this being said, it still sucks, it doesn’t cure the fatigue and pain, but it has made things more manageable. All the best to you and Jessica 🍋
I'm going through almost identical situations, I've been living this for 2 years, 4 months ago I started eating red meat, around almost 100% meat only, I had some improvements. I cut out all processed foods, when I cut I feel better, Because it was already possible to do something, like taking the garbage in the trash, Research the ketogenic diet, and carnivore, I'm just sharing my situation, hope it helps
Watching this , makes Me angry that this illness which I have had for over 20 years has so little research happening . We need a diagnostic test . We need treatments. M.E destroys lives . Why is it ignored ? Long Covid is getting a lot of attention .M.E sufferers have lived with a long Covid type illness for a very long time . Sadly We have waited so long for scientists and doctors to give us a glimmer of hope .
Drink sea moss and spirulina...all energy is from the Sun, plants are the only things on the planet to store the sun's energy, Sea moss has 92 minerals, the body needs 105 spirulina provides excellent protein and b vitamins even copper iron and magnesium. Low sodium, low iron and low b vitamins are what can create symptoms of chronic fatigue and it doesn't help if the patient is only drinking 1 litre of water per day...so a lot of complications can be resolved by giving the microbiome what it needs to perform what over 3 million years of evolution has given us
Michelle Shelly Style Whether or not there is a diagnosis YOU KNOW you are ill. NOW, it is up to you to change the outcome. Read the comments on living a healthy lifestyle. Fashion over 60 just might be what's killing you. Get back to Nature, dump the makeup and petro products. I wish you well, it's up to you.
@@chinookvalley I find your comment ill informed and insulting. I've used no petrochemicals in or around my home for decades, have used no cosmetics for many years, have used only the most organic and safe toiletries (mostly homemade), enjoy nature when I can, also have the pleasure of being with two small companion animals, and eat a clean keto diet with intermittent fasting. My me/cfs is still out of control and yet, according to you, getting well is up to me. Do you have anything of value to add or just more glib platitudes? Blaming the victim is vile.
Thank you all for making this film. I have had M.E. for 36 years, and although I have managed to keep some balance for a while now and been able to work part time, I still struggle daily with pain and fatigue. If you are suffering and do not have a diagnosis, I just want to tell you that I believe you and know that you are not faking it or making it up. It took me 2 years to find a medical professional that believed me and those 2 years were terrible. Don't let anyone torture you into believing that it is maybe all in your head. I Believe you! You are in need of help, and do not deserve to be sidelined by doctors or consultants that belittle you because they think they know everything about the human body, so if they can't find anything amiss in your blood results or in the neuro tests they put you through or the swallow test or the adrenaline tests or the cat scans or MRI scans, X-rays.... basically if the fob you off with "You have nothing wrong with you, all the tests tell us you are fit and healthy and it's all in your imagination" Tell them they are idiots. I know you are ill and I can see you. You are not invisible to me .
@@25marshalyn no it doesn't. I still have a chronic illness. That's not how it works. It's not a simple vitamin deficiency. How I wish it was. This disease has stolen years of my life.
I'm 34 now and had mononucleosis when I was 17. It was a pretty bad form, my liver and spleen got swollen badly and I had to be in the hospital for 10 days. After recovering, I immediately noticed that something has changed. I couldn't eat breakfast anymore because I would just throw it up, constant feeling tired, sore muscles... Now, at 34, I still can't have breakfast, I still have muscle and joint sores, still have a low energy level. I force myself to go through the working week and then I crash during weekends. I thought this is some sort of depression, but after seeing this clip, everything makes sense.
Try and eat ”clean” food, no processed, no sugar, no bread. Vegetables, meat from grass fed animals, eggs, butter, olive oil. Small amounts potatoes. Sometimes you can eat small amounts of anything, but if the ground is solid cheating sometimes is ok. You must have better energy levels, so you can do nice things and meet friends and family.
Epstein Barr virus (aka mononucleosis) still isn’t very well understood, but the damage it did to ur body might still be around. Please see specialist doctors on this, idk how you just casually ignored permanent fatigue for 17 years
Symptoms will continue to come and go, change and worsen without proper treatment. There is an underlying infection responsible for your health matters that needs to be identified, treated and fully eradicated.
I have suffered with cfs for over 40 years. I'm now in my 70's. I've been thru the, "you're lazy" attitudes to "you just need exercise" advice, to referral to a psychiatrist. Mayp Clinic's best advice in 2008 was to arrange your around it.With the surge in cfs patients post covid, I hope it finally gets the atten this devastating illness deserves.
I went to Mayo last year and they said the same thing:( recommended the usual pain meds, anti depressants, therapy, mild exercise. I was extremely disappointed
You must have incredible inner-strength to still be fighting after 40 years! I developed ME 34 years ago... exactly half of my life 😔... but - like you - I'm still here... every day a fight. More power to you dear lady... ❤️
I find the crashes horrible but the lack of understanding more frustrating and painfully exhausting. If only people who don’t understand or are uninformed were more polite then perhaps we would have a fighting stand for acceptance. My speech goes completely muddled the more I become exhausted and I come across as drunk. Fighting pain, mental and physical exhaustion and cognitive skills all have been with me since childhood and I am now fifty six. I live in the UK and where I live I might stand more chance of getting help if I lived in the Outer Mongolia region.
I have had CFS for as long as i can remember (possibly caused by a viral infection I had when I was one year old), but only got diagnosed when I was 13 years old. My CFS has gotten progressively worse over the years. I am house bound and almost completely bed ridden. Everything I do to survive is utterly exhausting. Thank you for putting out this documentary DW, It has given me hope that people will have more understanding and there will be more research.
hello ...last 3/4 years for me utter exhaustion ..had more blood tests and seen more specialists than ive had hot dinners ... keep fighting on eva much love from australia
@Eva Harris, I totally understand! Two words: Me too! But, I try to get up. I do have a caregiver now. That took quite awhile to find out how, then had a hella time for two years because it took me several agencies to meet her. I told her a lot about me, and she knows I try to do stuff just to keep living. There's a saying: 'A body at rest, stays at rest.' So, I go thru the pain of utter malaise & fatigue, but get angry at it, and do as much housework as I can, I keep my toilet, bathtub, and sinks spotless, and run my own vacuum. She gave me a pair of two pound weights, and she'll bring me leftovers from home on my worst days. I'm very grateful for this woman and at this point, trust and highly respect her. I showed her this a few days ago, so she'll see what others are going thru like I did when I found this for I didn't know about cfs either. After several ER visits and complaining to several MDs & RNs, I gave up. But, I didn't give up on myself! Then, on this video, it said to try to keep moving your limbs too. I feel a bit better after pushing that vacuum or running my own bath or cooking a simple meal with my caregiver assisting. Even just having to let her in everyday seems to help! She's not negative or lazy. She's not stupid and seem to have things so she won't steal dumb stuff like some have done to me. I wish her many years of vitality and good health, and all the best life has to offer. This I wish for all who didn't cast me aside as I lay in filth and a house that turned into a time capsule! This thing is SERIOUS BUSINESS. I'm not lazy! I held great jobs before my disabilities! I've worked among top surgeons and their PAs % RNs! I've made and sold R/X glasses and dispensed contacts! I've delivered packages and drove a semi for 30 years plus taught my SON to drive the thing, yet I don't think I'm all that great! I'm average but if I could do it all over again, yes I'd bring children in this world but the guy would have to have intellect, raw ambition and more! I would be hard as hell to get, and never wear my heart on my damn sleeve! Maybe because of my serious work ethic and determination, that could have had something to do with it and the fact that even today I have to fight like hell, and advocate aggressively for myself!
I’m so sorry. I got head lice followed by cocsackie virus when I lived in a dv shelter in high school. I’ve been ill ever since. I was already born disabled from a meth addict mother at birth so this crippled me. What’s worse is people think I’m very bright and will push me harder than I can handle til I collapse. Now I’m permanently disabled and use a wheelchair on good days. I still have a love of beauty so I create dystopian outfits and on less symptomatic days I play cozy video games. But my husband does most of the adulting around me like I’m an island. I’ve lost my dignity because people just think I’m lazy. Don’t you just think that word hurts worse than anything? Lazy. We’re not lazy. We’d climb mountains in our dreams and kayak the Colorado if we could. I’m learning that most people are ignorant and selfish and I can’t educate them on what we go through. We just have to hope that there’s a little piece of safety, beauty and resources left for we ghosts in our homes. *hugs
I suggest Biblical fasting, it can heal you, Hope your journey leads you to a miracle from God,it has happened multiple times with other people.i Pray you will be healed in Jesus name,
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
All of a sudden the medical field cares about Chronic Fatigue Syndrome patients!!! After years of ignoring and gaslighting by the medical field, it's about time!
there's a clip from "golden girls" about the story of one of the characters developing CFS and being gaaslight by her doctors. it was known and named even back then, and still we are dealing with doctors invalidting us and providing us with no care.
No they dont.
No, they still ignore it.
Exactly! I'm 27, 13 years of chronic fatigue syndrome after mono at 14. Reoccurred with mono at 23 and around the same time got bitten by a mosquito carrying Ross River Virus... It's been even more hell-ish since then and I'm still expected to be a normal 27 year old. Gaslighting by not only the medical field, but society itself!
I came here coz of curiosity coz I feel the same thing but I ignore it now I know if what happened in my body...
The worst is being called “lazy” when you were such and active, helpful person before. Clearly there is something wrong and the person is just as frustrated with being “lazy”
People are so cruel My friend told me how people always thought her "lazy " when she has struggled and had to try and work harder Just getting herself out of bed has been a chore since age 16
You shouldn't call them lazy..
they try their hardest but just can't make it..and feel doctor or no one can understand
is this syndrome progressive?
It is so frustrating that ppl call you lazy because ppl can't see you are sick. You hear: everybody is sometimes tired, but they don't know how it to live day and night being dead tired and having pain
I would try Garlic suppliments, vitamins B and D3. See what happens.
I have never understood why the medical profession refuses to acknowledge illnesses they just do not understand. This is heartbreaking.
It is not that we do not acknowledge it, it is rather that we have no idea what causes it so we can treat it. You cannot treat what you cannot diagnose. As far fetched as it may sound to you, we do not know everything about the human body. Not even close. And no one is going to put all of these resources for a minority of patients who present this.
@@skonstas4683 I think what the commenter was getting at is there are unfortunately many doctors and especially beaurocrats (like boards or executives in pharmaceuticals) in the medical field that have a huge ego about their knowledge and their perceived omnipotence on the medical field being the pinnacle of understanding of disease and the human body. It causes unbelievable arrogance sometimes and they do things like laugh at patients, refuse or even demonize alternative treatments or discount real symptoms. I've seen this firsthand as the son of a chiropractor which is a heavily demonized profession in the medical field despite its potential for incredible results. Doctors and surgeons just can't seem to accept that back surgery that comes with risks and a relatively high long term failure rate at treating back pain could be greatly reduced or cured with a chiropractic adjustment. They will refuse to send them to a chiropractor to even try it before surgery; ultimately hurting their patients. I've seen many patients of chiros you can even watch on youtube where they come in with failed back surgeries where their pain has worsened and theres only so much the chiro can do to help at that point since their spine has been permanently altered and fused. Its horrendous; this also goes for other alternatives like diet; nutrition deficiencies, acupuncture, etc. Anything not 'medical' could be a target for persecution or dismissal by doctors or policymakers. It is a serious problem.
@Alistair Balistair That is exactly one of the things I was getting at in my comment as well. Doctors are not educated in nutrition (I think thats intentional by big pharma corruption into the medical schools) and diet and nutrition is one of the biggest factors in healing a condition or disease the natural way. Hopefully that will change but right now its almost better to do your own research than to trust a doctor on how to deal with metabolic syndrome. I'm not knocking the medical industry or doctors here but they often have this crazy arrogance and ignorance to alternative treatments and that needs to change; those alternatives could save thousands of lives they need to learn that they aren't the only option for effective care lol.
We should be able to understand this. I have read about it and answered questions in major exams. It is weird because the pt. seems normal, almost like a trick question but we know it exists and are aware..
When some disease is caused by one of their “safe and effective” medical procedures they are particularly good at ignoring it and those suffering.
I hate when people tell others or me (have an autoimmune disease), it's just to get up, be active and you're just lazy. That hurts and I feel for anyone with ME CFS. It's simply heartbreaking 💔
My brother does this... I hate it. He says our family isn't 'weak' and I need to get up and work.
@@elliedear7053 🌹
@@elliedear7053 That is so disrespectful. Hugs 🌹
it's pretty simple though. carnivore practically nullifies the impact any auto immune disorder has. megadose thiamine and take melatonin and u are good to go...
That's the worst. I'm so sorry.@@elliedear7053
I chose Chronic Fatigue Syndrome (CFS) as my final year research topic, but unfortunately, my teachers and professors, who were all from the medical field, mocked and made fun of my choice. They displayed a lack of knowledge about CFS and its prevalence worldwide, which deeply upset me.
Their behavior during my defense session affected my mental health, leaving a lasting impact on me.
Still can't get over what they put me through.
Living in a country like Pakistan, where access to primary healthcare is challenging, I find it disheartening to think that syndromes like CFS might not receive adequate attention and research, adding to my stress and concerns.
Your teachers are scientifically illiterate
That’s heartbreaking
Shame on them 😢
I'm so sorry, I now have ME/CFS sine 2014 and it is since 2014, when I stated studying for MSC Animal Behaviour and Welfare. I was mocked by the rest of the 16 (meateating) students AND the lecturers for my kindness towards animals and for being vegan and an animal rights advocate. I was rejected and isolated, humiliated and belittled...I feel like they broke my mind and the chronic fatigue ensued. I'm indian myself and it's not common to find veggie/vegan indians who care about animals, none of my family do, and they rejected me a long time ago for being different. Well done for standing up for us, Thank you Essa
@@kittykat8177 Thank You! You are an inspiration🦋 I know how depressing and nerve-wracking it is when you stand alone and get humiliated by a bunch of people who call themselves teachers, gurus and educators.
I hope you overcome your symptoms soon! Sending Love 💕
The most frustrating things is that because you look ok.....no crutches, arm/leg in plaster, no stitches.....people dont think you are sick and often say "Just snap out of it." The exhaustion is very difficult to describe. The body aches debilitating. Just all round awful.
Yes I see that. I suffer from this too and I use a mobility scooter and people have laughed at me whilst I am on it. Because I 45 and look normal they assume I'm just on it for the fun of it. I've had comments, laughs, stares.
They just add to the sadness I feel because I already am struggling to live a normal family life as it is. I dont get to spend much time with my children because I'm always so exhausted and in pain. Sometimes I try push it but end up in extreme pain and extremely exhausted for a long time. Just getting to the bathroom seems like major effort. It affects my mind and moods too
Even when I've needed a wheelchair to get around due to the severe fatigue, I had a doctor suggest I was just "anxious to walk." Uh...what?? The amount of gaslighting surrounding this illness is so ridiculous.
Yes so true! Also I was thinking how so many will and have developed mental health issues on top of this. It's so frustrating g to see help suffering and can't get help or even have the issue recognized
@@Georgina7769 sorry to hear about it. My heart goes out to you. Hope the doctors find a medicine for this soon. I prey God for all the sufferers.
@@chronicallychic couldn't agree more! 👏🏻
A big thank you to the people who chose be a part of this documentary. You're being a great part of the awareness. My wishes go to all of you who suffer. Especially my dear friend who's been affected for years. Be strong
Thank you for benig such a good friend 🙏🩷🙂. Many people (perhaps most) who are severely disabled are extremely lonely and without much positive and rewarding input.
I’m crying how relatable this is. And it hurts that no one understands.
There are oral supplements that can fix ME/CFS in 1-2 weeks
Yes very emotional for me too. Got it 2011. Australia.
Me too. Btw ur playlists are fire.
I've suffered with fibromyalgia and chronic fatigue. I'm always stiff and tired. Headaches, pain, IBS and depression. I wouldn't wish it on anyone... horrible. Having no energy all of the time and feeling sick is just horrible!
Its like a body migraine. With head migraines thrown in. Its miserable
Low vitamin b1. Try floradix b vitamins
Look into microbiome (you are more micromiome than cells) and lions main mushroom!! the Mushrooms I’m talking about are good for making cell growth in your brain. You need to meditate. Also your vagus nerve!! Yoga is good for your vagus nerve.
I say this cause after the covid virus I am diagnosed with serve asthma. I haven’t been able to work for the last 2 years and targeting the brain has been what fixing me and my gut health!!!!
VERY WELL PUT @@shelleyjack1579
Thank you ❤
I have thyroid disease and I know what fatigue feels like. Fatigue is unexplainable, it’s something you have to experience to understand.
Yep, it is so hard to explain
Same here, Hashimoto plus low cortisol. I know how it feels when one has no energy at all, or gets tired so easily. I had to quit my job , I just couldn't work at all.
I often say that it makes me feel like “dying” and folks get real worried. 🤦🏽♀️ And then I have to explain, “NOOOO, it’s such an awful feeling that it’s not that I WANT to die, it’s almost like being alive is just too exhausting!” They don’t get it. They immediately think I’m ideating. 😂 It’s the worst feeling. And I know pain. I have Lupus, MCTD/w Polymyositis, Fibromyalgia. But, even the worst chronic pain, I can actually handle. But, it’s the fatigue that rules my life. Every aspect of my life. The kind of mom I can be, employee, friend, sister, etc. I was once so vivacious! Friends used to make fun and call me Mrs. Headly. 🤣 cause I could have 5 jobs at a time. At one point, I was doing marketing for two of my friends that were starting their own businesses, and I worked at BofA in corporate, so, I started a networking group that has a few chamber of commerce folks and everything, I still had my corporate 9-5 though, I taught music on Sat mornings, did gigs son Friday nights and Sat nights, worked w a recording studio as a studio recording artist and writer, gave voice clinics free of charge to church singers one or twice a week after work in the evenings, and soooo many other things I’m between. Still did my church thing 3 times per week, and had a social life. Now, I just work and lay around.
My kids have never met the real me. That stuff hurts. But, it doesn’t mean I wanna give up. It means that I wanna fight harder.
Feeling useless and exhausted at the same time 😔
Hitting the wall or sometimes the wall falls on me lol
As someone who has suffered with this horrible life changing condition for a few years now, I am happy to see it being looked into more.
Ja, het onbegrip van mensen is het moeilijkste…….Je praat er op een gegeven moment niet meer over. Wat je niet aan de buitenkant kan zien, bestaat gewoon niet…..heel frustrerend.
It is encouraging, isn’t it. We can hope that a biomarker can be found, so that people can get funds to help - it is a disability.
But a cure would be the best!!
same here! It's too bad my doctor didn't take me seriously when I asked her about it. It was awful, I had zero energy and after coming back from class I just wanted to go to bed. It wasn't laziness, but idk it was hard to explain how my body just didn't want to do anything. It comes and goes every so often and I hate it.
I hear U !
@@febee5285 ln look
I'm a biomedical researcher currently doing Multiple Sclerosis (MS) research. I learned many things from this documentary. This disease is at least 4 times more prevalent than MS! Research funding on me-cfs has to rise in the future so that more scientists are recruited to decipher this disease.
Thanks for spreading awareness
Love
CFS may be a mitochondrial disorder. I do better when I keep my Mg+ & K+ higher. And like many with MS, I cannot tolerate extremes in temperature.
Do you do a lot of scientific writing? Is there a lot of writing and graphical data in your career?
@@psychshell4644
Do you mean magnesium and K2?
Thank you in advance 🙏🏻
@@Phoenix_Arise_J No. Mag and Potassium (KCl)
@@psychshell4644
Thank you for replying. 🌸
Alison Braun's explanation of CFS about the "battery" is spot on. This is exactly how I feel with my CFS. I asked one of my sons once that when I died what kinda memory would he have of me and he said "You slept a lot". The truth always hurts and there is nothing I can do about it. Bless all those that are suffering.
I feel so bad reading this, because my kids are gonna say the same when they get older, because they say now that i already sleep alot, they 4 and 7 i hope better days are coming
You got ill after having your son? This illness sounds so scary. 😢
When my daughter was in reception they asked the children what their Mum's were good at. My daughter said sleeping. Goodness knows what they thought.
It pained me at the time but she's an adult now and we had/have long chats about her childhood and my illness and she doesn't feel she missed out at all.
I was always honest with them both about how I felt and they've never known me any other way. Don't be be disheartened
@@melissarozaliaplease check your iron (ferritin) and vitamin D levels. After two deliveries you might get iron deficiency anemia due to blood losses.
I had my son in 2001 after being diagnosed in 1995. Your son will remember other things, trust me. My son remembers the days we stayed in pjs and watched old sitcoms in bed while I was too weak to move, he is grateful for all the times I pushed myself to take care of his needs because he has an understanding as an adult how this condition works having lived with me his whole life. He is thankful for the little things and will remember a mom who loved him more than anything else and who took care of him while being chronically ill with not just ME/CFS but 19 other serious conditions including constant chronic pain that never stops. I have also been a single mom since 2002 so it was really hard, there were periods where I was bedridden for over a year.
This is a real syndrome. People are not just making it up. Modern medicine doesn’t understand everything. There’s so so much that we have yet to learn about the human body and what can go wrong.
Hi
We aren't designed for this rat race lifestyle. This is no mystery.
Thank you I stop going to doctor’s the
they tell me that everything is in my mind that it is depression that I do not make an effort to help myself I have tried to kill myself several times because I even wonder if I put all this in my mind thanks for talking about this subject I have lost all my family and friends
I went to the doctors about my posture, I can clearly see my body is slightly twisted not really bad to affect organs but it's not good, he told be to lie on the bed and lift my knees to my chest, he asked does my back hurt in that position, I said no, he said everything's okay, that's what I pay tax for, doctors nowadays are terrible, when I was younger, the older gen doctors were great now these new ones are just robbing a wage, can't do their jobs properly, receptionists don't answer the phone, back in the day, my mum would ring up for me as soon as the doctors opened and boom you've get through straight away, fair enough may not have same day appointment but the commutation between the GP surgery and the public was great, where as now, good luck getting through, it opens at 9 i think but you'll be ringing until 10 to get an answer. Joke
It’s a leftist fake disease also known as “laziness”.
My heart goes out for all the sufferers of this disease.
It's just hypochondria
@Destiny the pain of being a lazy bum?
@@PepsiMagt if only it was just that lol
@@PepsiMagt I take it you've never been ill ? Or had a close family member with a similar affliction ? Before I got fibromyalgia I would have agreed with you.
@@PepsiMagt Did you know patients with multiple sclerosis used to be called lazy too?
Please look up M.E. in a medical journal. It’s real.
I am 70 and have had CFS with Fibro and RA for 40 years. I am now in an electric wheelchair. Even with all the misery and the denial we've all faced, the most difficult part for me has been that my family has never once mentioned either of the words, Fibromyalgia or ME/CFS. This has hurt me to the core.The exception was my mother, who was very supportive. She's been gone now for years, but she sat in the courtroom with me; I was one of the first in the country to be put on disability for Fibro. I didn't have CFS yet. I'm also a victim of the DEA's and CDC's wrongful war on opioids starting with the CDC 2016 Guidelines on Opioid Proscribing. When I had pain meds, I managed a small home, a service dog, a car, etc. Without the meds I now live in a long-term care facility, and my life has gone to the dogs! I don't mean to sound so doom and gloom; I'm not like that. But bitter? Yes.
Mikhaila Peterson also had a tough time finding an answer. I pray you find hope with her story.
I am so so sorry! The saddest part about it is they have done this on purpose. They give the best doctors that only care for their patients and are actually there for them the hardest time, sometimes take away their license to practice medicine all together when they have done nothing wrong, and leave all of their patients to suffer. If our so-called leaders do not want doctors to prescribe pain medication, then why have they made it a legal medication if you are going to punish everybody that prescribes it and those that have a prescription for it. It makes no sense. It's just a facade for what they are really doing. They are hoping everyone that actually needs pain medication will not be able to get it, making it so we either turn to the deadly fentanyl laced heroin on the street, or end up in so much pain that we take our own lives, either way we end up dead- and that is how they want us. It's incredibly sad. You Are Not Alone!
I understand this too well ,since having serious side effects of my ra I'm been off all pain meds since 2020 and I'm housebound, I have fibro too ,with bowel issues, (blockage & adhesions) I've just been left to get on with it if I was an animal they would be charged with cruelty
I am beginning to wonder if they don’t want us to get better. I was in ATP/glutathione injections that helped me a few years back but the US government banned the ATP injections. Why?
I think what you have is a different diagnosis. You have RA fatigue aka rheumatoid arthritis induced fatigue. RA or autoimmune disease is the direct cause. You’re prob wheelchair bound due to degeneration of ur joints and severe joint & muscle pain. The symptoms can be similar, both severely debilitating.. But there’s no identifiable cause (etymology) for CFS.
my sister has had chronic fatigue since 2015 and she was only 11 when she got diagnosed but the amount of people who judged her and criticised her, calling her "lazy" was more than too many. It was so heartbreaking watching her suffer everyday and having to explain to teachers and other people her situation but no-one really understood her even though she was in an out of hospitals all the time and was on countless medications. She had to change schools because of the lack of support she had and now she prefers to not tell anyone so she isn't judged for it. So sad that so many other people have experienced similar situations!
Check her haemoglobin. She might be anemic. Wish her good recovery 🙏
Your a beautiful sister
True
My husband just tells everyone we know that my asthma is really bad, then I get weird amounts of sympathy. It is bad but it doesn’t bother me. Having little energy bothers me and I need help, but what I mostly get is judgement, (hence the asthma excuse). Still, I don’t get help with the asthma excuse, I just don’t get judged.
This is true of so many sufferers. Including my daughter. Sending lots of love. Tell her to be kind to herself
I’m sorry for all of you suffering with this. It must be so horrible to have your pain denied, and expectations of you not realistically match your abilities. I send you empathy. I care. I hope you get good treatment and relief.
Thank you. It is debilitating.
thank you, its really tiriing
That's so lovely to hear from someone outside the ME world, thank you for understanding:)
@@EndersWorlds You’re welcome. Thanks for sharing.
It's nice to find someone who understands, thank you!!
I'm constantly having to explain how my illness makes me feel, but I feel like she doesn't even care! All she can see is me walking around with a smile on my face, but what she doesn't see is the part where I will only be able to go from my bed to the bathroom and back to bed!
I also have severe anxiety, and to cope with having to leave the house, I will put a smile on my face when I go out the door, and take it off when I come back in again, much like putting on a coat or a jacket!!
I am 4 minutes in, and feel more seen than I have since I got sick a few years ago. Thank you so much for making this and sharing it!
Same here. I suggest dr morse's videos. everything else and especially the medical community is just noise, and a pathetic waste of time.
I have the same condition and pretty much recover by adopting a gluten free diet❤️ I seen many specialist and none of them have an answer. Hope you can try if you have no other option.
I also have this terrible disease and am only functional for about 4 hours a day (that is with a medication that gives me a couple extra hours of vertical living). The rest of the time I must lie on my bed. It has had such a huge impact on my life. I can't work. I have to pace myself with anything requiring effort. I feel alone.
What medication do you take that helps? I’ve got NO quality of life anymore
I take provigil 200mg. The generic is called modafinil which Medicare won't pay for because I take it off label so I buy it for 25to30 a month. It's not a cure but it definitely helps. Sending love. @@chelseyhurd
I am suffering the same. I offer it all up to God 🙏
As someone with depression I could relate. Losing part of yourself is really something big, moreover with whole world calling you dysfunctional
Soo sorry. Pray ask JESUS to heal and guide you. Kevin la Ewing is a pastor on these illnesses he helped me.
Same, friend...same.
I can relate. I can sleep 9 11 hours and I never feel rested I always feel tired. I just always want to sleep. I’m always so tired and depressed . I just feel my life is passing me by.
I'm glad I saw your comment. I was thinking that maybe this was a severe case of depression but, I've never been severely depressed so I'm ignorant to this topic. If you're able and don't mind, can you explain the difference between the two illnesses?
I can relate to feeling paralyzed. Inside your screaming "get up, GET UP!!!" but your body just doesnt move. Sometimes my muscles flinch like they are trying but nothing. Just nothingness. It's frustrating and embarrassing
I have been diagnosed with Fibromyalgia and CFS. It effects everything and I have to deal with ignorance from people who think that just because I don't look sick I must be faking it. I have been dealing with this for 17 years. I am Canadian and I have had to fight for disability and it has caused depression and anxiety. I hope that these researchers can help.
Your story may as well be mine 😶
Iam the same fibromyalgia and CFS
Some people make up fake shit and it ruins it for other people who really have problems, hope you get better.
@@dwynepen7626 Yes it would be great to be part of this research, we have never been able to figure out how I got it. But I do remember being hospitalized for a week for an infection that they could not identify at the time. I wonder 🤔
@@hul8376 NJ
What I love about these videos, is that I can listen without having to watch, while I work, thanks to the translation. Great Job DW! 👏🏾
I was just wishing they had it in the original German. It’s hard for me to follow when I have to keep switching languages in my head.
This is by far the worst of my chronic conditions. I can handle the pain, but the constant fatigue sucks every bit of joy out of your life. And no one who hasn't experienced it understands.
I am positive that I can help if you give me a chance. I am a real human with over 3 decades of experience. Please read the About section of my RUclips profile and contact me via email if you would like help.
@@etdmike I'm willing to try pretty much anything, unless it's dangerous (or super expensive, then I couldn't afford it). So yes, I'll check it out! There's not a lot of research about the issue and pretty much everyone tells you they don't know what to do...
@@awetistic5295 Trust has to be earned. I will identify a conclusive pattern of symptoms without knowing anything about you, show you exactly where the infections are located and guide you in the right direction to be "properly" tested. This will show you that there is an underlying infection causing everything. This needs to be done via email to respect privacy on both ends.
This is by far one of the worst illnesses you can have. I've had it for 11 years now. I've taken almost every psychoactive medication, seen every specialist, supplements, you name it with very very little improvement. Every single day feels like war zone, no refreshed sleep, wake up extremely tired, brain fog, have to wait for 3 hours until I'm able start talking to people, muscle pain and not only that, but now have anxiety which also led to depression. I have a masters degree and many professional certification but have to fight to do simple tasks, instead of working, exercising and living life. I really really hope the medical community comes up with something that can treat people with this illness. Feel breathless just typing this on my phone. My heart goes out to everyone who has it and has to go through it.
Actually, most people with ME/CFS are NOT depressed. There have been association studies. Most doctors are not aware.
The key to improvement is to avoid all pharmaceutical drugs.
@@sneakypress and avoid toxicVaxs
I stopped eating meat, eggs, and dairy a month ago and suddenly actually felt happy with energy. It’s like I was depressed before but not actually depressed. Probably better described as apathetic and tired.
Tobi P
0 seconds ago
I was diagnosed with CFS back in 2014 after getting a flu or some type of virus. Before I got sick I was very active and ran or rock climbed every day. I came down with CFS after the flu because I didn't allow my body to recover fully. I was sick for a week, felt better on the 7th day and then ran a 10K race the day after. That evening I got sick again and felt that way for the next 1.5 years. It was the worst period of my life. No one believed I was sick and I didn't have the energy to do anything besides sleep, which I couldn't do. Even if I did manage to sleep some I would wake up just as tired and sore/aching all over.
Fortunately a doctor told me that there was anecdotal evidence that resuming exercise can help. Which was super counterintuitive because I was always so tired, exercising was the last thing I waned to do.
Anyway, I started a routine where I went to the climbing gym every other day and climbed/moved my body lightly for an hour. The other day I would walk and eventually jog for 30min. Eventually I was able to go longer and longer. After about 2 years I was close to where I was before I got sick. It still comes back when I experience excessive work stress or am overwhelmed but I now recognize the symptoms and know when I need to slow down but I always keep light exercise as part of my routine.
For me the "cure" was resuming exercise. It wasn't an overnight fix but over the years I have had less and less symptoms.
Look into Lyme Disease, and confections like babesia and bartonella. If you’re based in the US, look for ILADS Lyme-literate doctors. It is multi-systemic and can produce symptoms of CFS.
How awful, I never knew it was this bad. So sorry for anyone suffering with this condition and I just hope a medical breakthrough happens soon.
Hoping and praying a medical breakthrough does come through the thought of getting back to somewhat of a normal life is only a dream for me right now. I miss the old me, my children miss the old me and my grandchildren have only ever known this m.e
I am 45 years old with adult children, teenagers, and younger children. They all miss how mum used to be.
Thank you, my whole family thinks am lazy, for years and years :-(
Hopefully they find a cure
Thank you. Truly. It's a horrific illness.
Thank you so kind of you to take time to watch
14 years of medical neglect with ME/CFS... Thank you for this important documentary!
A long and painful 30yrs for me. I almost feel hopeful now that a spotlight is on finding answers. It's about time.
I was diagnosed in 2008 with CFS. When I asked the doctor what I could do for it, she told me that many of her patients go on disability. That wasn’t an option for me. I did reduce my work schedule and started taking supplements.
I feel like I missed my kids’ childhoods. Always looking for extra sleep or rest, even routinely taking an hour nap at work instead of eating lunch. I started making noticeable improvements over the last 5 years. I still manage my energy expenditures like a checkbook.
Switch doctors, also give daily meditation and prayer a try for three months or so ☯️
@@ascend555 There is hope , Supply ur body with highly nutritious food , Avoid exercise go for walk and try brain retrraing. Keep checking every month definetly all will get better , I am sure , We are humans capable of creating all sought of complex machines , But cant find solution for our own health.
So it took 10 years until you felt good ?
My mom has battled this for years now. Such a bizarre disease. I'm so glad more awareness is coming up.
vaccine dmg ,wake up
@@Turican76 No, it's not related to that, because most of that "vaccine dmg" is just conspiracy theories. For some, it's related to symptoms after they have had covid, which are now being called, "long covid".
I can help her.
@@mikecarey1990how
I don’t know how to express my gratitude to dw for making this video. I felt like it gave me a voice to speak.
Thanks for bringing some hope back. Millions are suffering with depression and lack of hope in life because of ME CFS
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on RUclips have the permanent cure to eradicate Shingles virus permanently.
It’s a leftist fake disease also known as “laziness”.
I'm going through almost identical situations,
I've been living this for 2 years,
4 months ago I started eating red meat, around almost 100% meat only,
I had some improvements.
I cut out all processed foods, when I cut I feel better,
Because it was already possible to do something, like taking the garbage in the trash,
Research the ketogenic diet, and carnivore,
I'm just sharing my situation, hope it helps
I’m so glad that attention is starting to be paid to this awful illness. I’ve had it for 8 years. Most people don’t understand how painful it can be and how incredibly isolating it is to deal with something even most doctors don’t understand. I have even been laughed at by a couple of doctors. Others told me I was depressed or had some kind of mental issue. I had mono when I was 6 years old. Then when I was 28, I experienced a reactivation of the EBV and have never been the same since. I’m 36 now and have good days and bad days. On the good days I can do a small amount of exercise. On the bad days I can’t get out of bed or even pick up my phone sometimes. Everything hurts and no doctor has ever been able to tell me why. It took 6 years to get a diagnosis, after which I had already lost a career because my job required me to maintain a medical certification. My medical certification was revoked and I couldn’t work that job anymore and had to leave with student debt from the degree that I got for that job. It’s taken years to even begin to come to terms with it all and with how my body works (or doesn’t). I do what I can and hope for the best. And in the dark moments when I feel overwhelmed by emotion and despair because this illness isn’t showing signs of going away any time soon, I think of my family and friends and reach out when I can. And most importantly, I find something, anything to laugh at; even if it’s dark and twisted. Laughter, loved ones, music and my pets have gotten me through so much. When documentaries like this come out, it reminds me that there is still hope and that there are people out there who care and just need the right support to get the right research going so we can tackle this thing once and for all.
I hope we get a cure. I'm a depressed bum who feels fatigued all day, and yet, I can't imagine what it would be like to have it be 100 times worse. It's good that you understand the value of your people and the wonders they can do to your morale. My beat wishes to you.
There is always hope and todays medicine is about to be revolutionized with modern technology. Keep holding on and don't give up. Although my health issues are different from yours I find that looking after my mom who is housebound and our pets Dog and a Cat keeps me going as they very much need me. Remember, don't give up.
I don't know if this will help you, but I had CFS for over 8 years and went to many doctors and hundreds of blood tests with no results. I had headaches all day long, bones and joints were very painful, my eyes were so painful that I could barely open them, and of course the constant fatigue all day. Would sleep 14 to 16 hours with no relief. It was a local Hometic doctor that specialized in CFS who put me on over-the-counter homeotic supplements that finally and slowly brought my energy back so I could lead a halfway normal life. I still have small flare-ups that last for a week, but nothing like it was at first. No more crashes!! I wish you the best of luck, please get better.
@@johnbreech6280 were these supplements helpful in rebuilding your mitochondria? This seems to be a key point.
@@johnbreech6280 please let us know your prescription and doses
I got really bad fatigue when I got covid and lasted about 3 months. I literally thought it was never going to go away until one day i started getting my energy back. Fatigue is a ugly thing to go through
My Dad started having medical issues in the late eighties. In 1990, he had to stop working. CFS wasn't heard of before. All doctors could do was guess and document his condition. Without a solid documented diagnosis, he could not receive disability benefits and my mom had to carry our family of 5. He tried going back to school to get a teaching certificate, but CFS can also limit your mental capabilities in the energy it takes to learn and process information. He was not able to finish. It took my parents over 10 years fighting with SSA in hearing after hearing to finally be awarded benefits. This disease has taken him from himself, his daughters, and his wife. Although he is still with us, we lost HIM 32 years ago. It's hard grieving someone when they are right in front of you. It's even harder when they grieve for what they lost themselves.
I'm so sorry to hear 😭 I've had it for over 12 years now and I know how painful it is when you have a family. May I share something with you that is helping me? I'm not healed yet, but I've found relief from symptoms. Raelan Agle (here on youtube) also had me/cfs and she healed after a decade. She's made it her life's work to interview loads of people that also healed from it. For me the latest interview with Ben Ahrens helped a lot.
That is so tragic. It seems like death would have been kinder.
Similar to Alzehiemers....my dad is still alive at 83 but he is lost to us and himself.
@@juanitarichards1074 so sorry you and your family and him have to endure this.
@Jim Harrington Similar enough....
So depressing to hear how little awareness and funding there is for this disease. We’ve known about it for decades and it affects so many people in such horrible ways. To be a young unwell person and just be called lazy, even by those closest to you. It’s really crushing. Sadly that is the world we live in.
It's been around since 1972
People used to be tortured in mental assylums for having it
@Jim Harrington do some research or at least watch the video please.
@Jim Harrington "I did and it was biased" - said jimmy
@Jim Harrington it’s not a disease, it’s a syndrome. A syndrome is a collection of symptoms. You get diagnosed with chronic fatigue or fibromyalgia when doctors do all the tests. Everything comes back negative and they throw their hands up in the air. It’s a diagnosis of exclusion.
I was diagnosed with fibromyalgia and chronic fatigue after years of testing positive with cytomegalovirus, so in my case there was physical evidence, however even after the antibodies went down and eight years in, I still have debilitating symptoms.
“People have themselves to blame” well I can say that doing things is a hundred times more difficult than before. I used to be able to move 20 bales of straw all by myself, wrangle large sheep and cattle. I was extremely active. Throughout the onset of symptoms, I still tried to remain active. But sometimes I would try very hard, and 10 minutes in I was literally asleep on the ground… how exactly is that normal? Is that just me being lazy? Regardless I still try to lead an active life, but it’s not going so well compared to the life I had before.
UPDATE:
Since January 2023 I have been mostly carnivore and my fatigue, joint pains and brain fog have all but disappered. If I slip up, I can feel some slight joint pain and feel like I need a down day but nothing like the dark days of sleeping round the clock.
However, I have lost three stone on the diet and been doing heavy DIY and gardening and mucking out my horse and riding again. I all but lost my 50s but at 64 I feel better than I have done in years.
> I developed ME/CFS in 2006 but it wasn't diagnosed until 2012. Quite by accident I discovered that having a mainly keotgenic diet (minimal carbohydrates) improved my condition considerably. I was literally bedbound for about 5 years but I have recovered to a point where I can manage much better - actually being able to get up and pacing mysef. It took a long time though and I couldn't predict how my condition would progress. Encouragement by others doesn't work. We have to recover or improve at our own very slow rate. Much love to all my fellow spoonies.
How's your vit D levels?
I too had CFS and Fibromyalgia until I got underlying viruses in check with herbs, increased vit D and went on the autoimmune protocol diet.. Feeling much better
I got ME in 1982 and was sick for 6 years then I got a little beter. Now I am on keto for one month and my iron level is very high..dont know if I am doing the right ting. Best wishes from Amsterdam.
I do not have this diagnosis but have been sick post Meningitis from 2012 ....10 years and they thought Lupus Fibromyalgia IH Pseudo tumor... and they really don't know. This documentary was my life 100...
I struggle with pacing my self....bad
A good hour ..I over do it. .BED....
My 80year old neighbors out do me...
Pain!!!! Sugar makes me bad ....
Going to Keto!!!
Any suggestions with my Drs. They don't know how to help me ...
Watching Dr Berg RUclips channel
I want to do his Vit D protocol for Autoimmune.... Have you done it?
@@heddysue0655 please share more!!!
I am ill. I need the information on what your protocol is. Check Vit D levels and notice sugar and process foods cause more pain and
The Sleep Disturbances are horrible!!!
Christine, You spoke my words. I was diagnosed in 1993...many years ago long before it was recognized in mainstream medicine, I was a critical care nurse and in my 30's back in the 1990's. I had nearly died at age 3 and at age 15 with pneumonia and after that I was never the same. I remember at age 8 I was so tired that some weekends I would sleep from Friday after school clear through to Sunday afternoon. My parents took me to the Dr. and he gave me iron.
I went to university, became a nurse and had two children, but I suffered in silence and pushed through. Finally I found the Edgar Caycee clinic in Phoenix..after a full day of testing and questionnaires I got the diagnosis. Back then it wasn't an official disease but it is now thankfully. I've managed my symptoms by taking 20 supplements a day and a low carb diet, however now at age 65 I'm once again in a crash.
I totally relate to what you've gone through.
Im a Canadian lady. I have suffered since I was about 32 years old. Im 58 now. Its been so horrible. My bones and muscles are killing me. Taking aĺl my strength. This is serious illness. Fatigue is awful. God bless everyone in research and suffering. Amen
I am positive that I can help if you give me a chance. CFS is a syndrome, which means there is something causing it to occur. I have over 35 years of experience. Please read the About section of my profile and contact me via email if you would like help.
I’m 60 ….same here
@@beefstew4698 I wish we had answers. Are you able to work? Im really struggling.
Low vitamin b1. Look up beri beri.
look for some deficiency of micronutrients or macronutrients. Also look for gut flora
This fabulous video needs to be shared by many on social media. The situation for recognition and treatment in the USA is even worse than described here. I can't begin to tell you the frustrating, life alternating impact this illness has had on me for the past 16 years. It's there every single day, even on the good days.
I agree. I was treated with IVIG for four years ..... And it saved my life.
Still have symptoms, but am older and have Cancer. (X5) So I never know what is what.
I just fixed myself tea and crawled back in bed.
Been living with CFS since I was 14. Used to really get to me but I have learned to cope (thank you coffee and Provigil). Their are still days when it gets hard and I've had to restructure my life greatly. I am fortunate enough to have a career in which I can financially get by on a part time basis so I am very fortunate in many ways. In the end, it remains a struggle I think I have just gotten so used to this being my "normal."
@@token555 please try Fermented foods Kefir, kimchi, kombuscha, miso,Sauerkraut...) 2,3 Weeks afther have so much energy...
@@moniqueengleman873 IVIG helped me so much, but Insurance wasn't willing to cover it anymore.
@@-willow-980 God I know it.!
I don't understand. When I started IVIG the 30 grams cost 8000.
My insurance paid.
Within 4 years it went up to 20,000
Now up to 40,000 a dose.
It is completely crazy. I swear it helped me survive brain cancer.
Now growths on my spinal column is back but I cannot get the treatment that worked for me.
It was like liquid gold.....
Thank you for this video! I am a 62-year-old Canadian living with ME/CFS, Fibromyalgia, Giant Ganglion cysts, and drug sensitivities for 40 years, and have just been rejected for the 3rd time from receiving ODSP support (disability funding). All these testimonies are so validating to my condition... I pray for more research, if not in time to relieve me from these debilitating symptoms, at least for those younger than myself suffering...
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on RUclips have the permanent cure to eradicate Shingles virus permanently
Joanne I am in Ontario and I have been able to get my ODSP. But you are right it is a huge fight and they made me reapply every two years but last year I was able to get it permanently. It is hard to fight when you have no energy and I think they rely on that sometimes.
@Tamera L Yes... I think now I am too close to 65, and by the time I go through the whole process of applying and gathering more medical support, I'll be getting Canada Pension... It's crazy... I have to live on 476/mth right now (ON Works) until then... Glad you were able to get it - mostly, I hope your health improves xo Take care xo
It’s a leftist fake disease also known as “laziness”.
Fluroquinolone antibiotics
My father had CFS back in the early 90s. No doctors believed him. He had chronic insomnia and terrible headaches in addition to crippling fatigue.
He died in 1995 at 45 due to pneumonia, but I'm convinced the chronic exhaustion contributed to his death at a young age.
I’m so sorry you lost your dad.
@@anthonydomanico8274 I appreciate that Anthony
My condolences to you.
@@razorsharplifestyle101hard9 Thank you ❤️
I lost him when I was 22. I just turned 50 and I still miss him terribly.
@@shellbell313 Well, you can either miss him for the rest of your life or get over it, process the emotions and then you can live your own life, the way he would've wanted you to.
I feel sad that the documentary did not mention people who got CFS with out having had any viral infection, people whose trigger were stress or trauma
it happen with me*
Auto immune condition like soft tissue rheumatism also causes it. Or stress causes that. It is a vicious circle.
Yes, research shows that those who get these diseases have a history of high ACE scores and/or other intense stress.
I developed CFS bc of having fibromyalgia. Fibro messes with your melatonin production, causing insomnia.
And I saw someone mention the new opiod guidelines. Imagine being in pain, in spite of taking 200mg of Tramadol each day. My 'pain mgmt' team refuses to up the dosage, even when I'm in severe pain. They kept upping the Gabapentin instead, which has never helped my pain at all. So, a couple months ago, I told them I was no longer going to pay for an Rx that did nothing. I've started using THC gummies, which don't always stop the pain, but they do leave me feeling somewhat detached from the body, so my pain is not so immediate.
I've also learned to keep my mind busy, so I don't focus on it. I read, play games & watch videos. I've not been able to work since 1998, I need to lay down often during the day.
On top of fibro,, I have osteoarthritis in my neck, hip, back & knees, plus spinal stenosis & both bulging & collapsed discs in my back. The chiropractor is afraid to treat me. I tried acupuncture, but they could only see me one - two times a month & the struggle to get dressed & go out to the clinic wasn't worth the one or two days the treatment helped somewhat alleviate the pain.
The whole thing is a nightmare where I'm always exhausted & hurting!
A simple hernia operation gave me ME/CFS
Thank you for making this. As someone who struggles with this syndrome so much more education for doctors and the public. Also there is not enough research and funding.
Thank you for watching and taking the time to comment, Erinn!
The medical system makes more money with people suffering than with healthy people. Treatments are hidden and even censored on Big Tech platforms.
Chronic fatigue= laziness. Get up off you butt and start doing something productive instead of being lazy and trying to be a victim. Problem solved
Check your metabolism.
Check your vitamin deficiency.
Like many auto immune disorders it is important to decrease inflammation in the body. I dont know if anybody has tried this, but the best to do that is by eating low carb or even better carnivore with added supplements controlled by blood work. Vitamin d3 in high doses is important, because sufferers stay mostly in bed and dont get enough sun. They have to eliminate inflammatory foods like seed oils high in omega 6, gluten and most dairy. It takes time, but there should be improvements after a year. Dont expect the doctors to find a magic pill that cures you and then you are 5 years on without a solution. You can start yourself and it doesnt cost much. Many people with autoimmune disease get better.
The agony of isolation can never be expressed enough, nor can the physical pain.
Maybe change your environment. Leave Germany if you'r there. Not a healthy country
I have fibromyalgia ,very severe and chronic fatigue for 40 long years! The pain,dépression,not to have a life is heartbreaking! It’s affect the family life and friends,,devastating! 😢😢😢😢😢😢😢😢
I have it all 27 years are you hypermobile to
I found out in 2022 I have fibromyalgia. I had chronic fatigue and never felt recharged. I would be falling asleep as I walked around or talked with others. I became depressed because I was sleeping my life away. I'm always worried it will come back. When I nap I have a hard time with pushing myself to get up. My Dr said to fight the fatigue.
@@tiffdoodles fybromyalgia I've found can be a symptom of me where is your pain? All over or spots? Check for hypomobility heds and sleep apnea it's also linked to autism ADHD for which ime diagnosed late 43 I do reccomend d ribbose 27 years cfs 6 years fybromyalgia my father had CFS recovered now just list my mum.hes starting CFS again 74
@@Truerealism747 my pain is all over. :/
The problem is everyone, even medical professionals, want to view this solely as laziness.
I've had ME/CFS most of my life, labelled lazy, a hypochondriac and a hysterical female of a certain age, until 2016 when a new GP said, " but you have Chronic Fatigue Syndrome, so these things are expected. " Until then, I had no knowledge of the condition. I just thought everyone else was right. NOW I've learned so much about why my body reacts as it does.
I’m so sorry you had to go through that. It’s a cruel disease. I’m clad they are calling it a disease in this documentary. The invalidation around this has been almost as bad as the disease itself. Wishing you health and peace
Bless that doctor!🌷
Typical medical misogyny in action. Glad you've finally been diagnosed with a proper doctor.
i found the same thing in my medical records, but nobody ever mentioned it!
“Hysterical female” yes medical sexism is such an issue with these conditions! Fibromyalgia affects mostly women. Estrogen has been linked to pain sensitivity. There is a physiological cause for all of this, doctors need to learn!
My younger sister has had ME/CFS for over three years now. It took nearly a year for her to get a diagnosis. In 2020 she had a bad fall and concussion which made all of her progress disappear and even make some symptoms worse. She developed severe light and sound sensitivities which are still present today. Whereas she used to be able to watch youtube, read a book, or listen to music, now she can hardly go outside without sunglasses or noise-cancelling headphones. She has been going through treatments that have helped make progress, albeit extremely slowly-and though we don't think she'll be back to her old self, we are hopeful that she can improve. Throughout this experience I've been away at college and unable to visit until recently due to covid restrictions. I understood somewhat what she was going through-but this documentary definitely helped me get a better insight into how she feels internally. Thanks so much for making this and raising awareness, hopefully with the new rise of long-covid, ME/CFS will become far more recognized and researched.
@Wa and Andi McDowell please see above 👆🏻. Thanks.
You’re such a good and loving sister. She’s lucky ti have you in her corner
Many people unfortunately are misdiagnosed or diagnosed with CFS where the doctors completely miss or are not aware of the actual cause which is cranio cervical instability, the best way to diagnose it is via digital motion xray or a DMX Craniocervical Instability is a medical condition characterized by injury and instability of the ligaments that hold your head onto the neck. Common symptoms of Cranial Cervical Instability include a painful, heavy head, headache, rapid heart rate, brain fog, neck pain, visual problems, dizziness, and chronic fatigue.
Chronic Fatigue - A Symptom of CCI, AAI, & Upper Cervical ... centenoschultz.com/symptom/chronic-fatigue/#:~:text=Craniocervical%20Instability%20is%20a%20medical,%2C%20dizziness%2C%20and%20chronic%20fatigue.
Hey Ben, look into Lyme Disease, and coinfections like babesia and bartonella. It is a multi-systemic disease that attacks different parts of the body and mimics symptoms of CFS, carditis, rheumatoid arthritis, multiple chemical sensitivities, fibromyalgia, optic neuritis etc. There is a documentary called “Under Our Skin”, also look into ILADS Lyme-literate doctors if you’re based in the U.S. The more you research the more you’ll come across extensive treatment plans and lifestyle changes: like detoxing mold and heavy metals, herbal medicine (antibiotics are highly discouraged and only necessary in severe acute conditions), killing parasites, reducing chemical and EMF exposure, together with improving diet, improving microbiome with probiotics, bee venom therapy. Ask your sister to go with her own intuition and trust in her judgement as she explore these options and create a unique treatment plan for herself. Glad she has a supportive brother speaking up for her here. All the best!! And I hope she recovers and thrives again!
She was lucky, it usually takes 3-5yrs to get a diagnose…
First of all, let me say that Chronic Fatigue Syndrome is not a rare disorder. It’s just very frustratingly misunderstood and undermined. I happen to have Myalgic Encephalomyelitis, which is pretty much the scientific name for this debilitating disorder. And it is a terrible disorder to have. Doctors tell you that it’s just fatigue, and that exercise will help. But it doesn’t at all. It will pretty much always make you worse.
I now use a wheelchair full time, and require full time care. Even my caregivers don’t understand my needs and the fact that I need so much help.
I’m glad this video has been made
Have you checked vitamin levels. Some have been helped by vit d . Need dr to check blood levels though.
@@janeteddddd u don't need a test almost everyone lacks vitamin d make sure to take it with calcium to increase absorbtion of both
@@janeteddddd - if someone took vitamin D and it helped they didn't have ME, they simply had low vitamin D levels.
ME or CFS is a diagnosis of elimination as there's no test for either so blood tests are always taken as the first part of the diagnostic process.
My dad was diagnosed at 17 with me/cfs and it's still a struggle but when I was around 15 I started to develop very very similar symptoms to my dad and kept worsening. I was later diagnosed with eds (a genetic connective disorder) and various forms of autonomic dysfunction. All three of those conditions have such little research or support. It'll always be in the back of head of if my dad has EDS+dysautonomia or if it's just a coincidence that we both have such similar experiences. We desperately need more resources and for those who aren't diagnosed, so many people out there suffering behind closed doors with no accessible support. We need more research. This condition can lead to such an isolated life with a financial strain and leads to mental health issues because we get left behind . The people in this video are so so lucky to find such passionate doctors , very few do.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
Maybe I missed it, but what is the treatment?? Is it curable?? @@abstuli
I've had CFS and fibromyalgia for 35yrs. People are not understanding and expect you to be able to at least do this or do that, they can not possibly imagine what I'm going through. I got Mono, EBV, and haven't been the same since. I was a hyperactive workaholic, until this happened, and it ruined my life.
Do you know if this is hereditary?
@@saifeerahman4925 Only the susceptibility to developing the illness is hereditary.
Female and autoimmunity plus viral exposure and genetic predisposition. We are finding long Covid in women presents similarly
I am so sorry to hear you had CFS. You may want to refer to Dr Emoto on water experiment. The research may lead to the answer to cure CFS. You can find out more details in RUclips.
Those things could all be related to the heavy metals and other toxins in childhood vaccines that our bodies cannot truly ever fully get rid of, eventually it starts negatively affecting more and more systems, up to and including the brain. A lot of what is being called genetic disorders are actually just genetic or circumstance differences of people’s ability to detox or safely store (in fat) the toxic injected substances most of us encountered but had no idea was so nasty.
This is a nightmare illness. I would never survive this if i had it. Prayers to all who are suffering.
This needs a lot more exposure. Thank you for covering it.
Actually, the true cause of these illnesses is what needs a lot more exposure !
People keep saying the worst bit is we don’t look Ill. yes we do, we look tired and haggard. I used to look healthy.
People keep saying there’s no way of testing it? What about those of us who were sporty before and have been wearing a fitness watch for years. The numbers are crystal clear.
Just because medical professionals can’t find the cause doesn’t mean it’s not there. A fine example of incredible arrogance from the medical profession.
I used to be a long distance runner, now have CFS that gradually came in over 6 ish years and can barely walk without feeling like im gonna pass out from fatigue. Did you have a smart watch pre and post CFS? If so what differences did you see ? I'm interested.
hi, @ratgreen I’m sorry you have been living with this. Mine came on gradually over the years too. I was diagnosed last year after a virus.
Yes I have had a smart watch pre and post CFS. I get chronic neck pain too. My tracker whilst having CFS shows high stress during sleep. Higher resting heart rate. Decreased VO2 max (although would decrease anyway with stopping training). I slept 15-16 hours per day. Sometimes for days at a time I wouldn’t get up. Unrestorative sleep. Low HRV Higher breathing rate during rest. Pre CFS I was considered to have a fitness age 6 years younger than my actual age. I know they’re not considered accurate in medical terms but they’re consistent in their inaccuracy.
I have improved a little by pacing and keeping a diary of everything over nine months and changing things that I see as triggers.
Each day track
Pain level
Sleep
Body battery/energy level
Food
Water intake
Mood
Stress factors
Meditate
Patterns will emerge. Find a medical professional who will support you. Do not listen to negativity. Don’t lose hope.
When we know nothing we need to know everything.
@@lucyilly428you are a fighter❤ I too am suffering in silence . I have kids and am a single mom. I’ve thought about ending it… but my kids have saved me from giving in. I am slowly getting better… but then I feel myself regressing . It’s soooo frustrating. May God help us all.
@@Dream7773 keep fighting. I’m getting there although very slowly. No naps during the day anymore and sleeping 9 hours. You’ve got this.
@@lucyilly428 what do you feel helps ? I try to exercise but then I feel tired for days afterwards . I used to work twelve hour shifts before and feel fine… any advice?
Thank you so much for bringing this up. The medical community is so unaware of this, and most practitioners, even in the developed countries ignore patients with ME-CFS as malingering!
Thanks for watching!
Speak for yourself! YOU are not the MEDICAL COMMUNITY.
@@v.prestorpnrcrtlcrt2096 looking at your other comments you say nothing positive mate.
Do you speak for anyone of note?
Maybe take a break from the screens, take some deep breaths mate.
Come back more positive. A more useful member of the RUclips community.
This disease is far more brutal than your words could ever be, I promise you that.
Maybe try supporting those worse off than yourself instead of conjuring false flag arguments against total strangers.. 🤷🏼♂️
Most doctors take symptoms like this seriously, you’re not making sense.
@@delmarchipperson2049 yeah they have a serious expression on their face when they listen to me but I’m yet to meet one that says
“I can help” ..and can actually help.
Graduated exercise is not the solution.
What’s your solution?
How dare a doctor assume that a thick medical file is indicative of the source of illness being psychiatric. That is an outrage. So-called doctors like that should lose their licenses. They're not even practicing medicine. They are practicing avoidance of learning about what's really going on with people. That's heartbreaking to hear.
I have had the same response..
@s s a lot of doctors are very lazy. They don't actually want to do the work to figure out how to help someone, so they'll just sum it up to psychiatry. Lame. No excuse for that. Some people do have less healthy bodies than others. Fact. The doctor who wants to sum it up to psychiatry rather than try and understand the patient and the complaints should not be in medicine.
One of my kids had a thick medical file, along with a legitimate diagnosis, migraines. It took a long time to find the right combination of meds. I can't imagine what it must be like when doctors don't try to help. I hope that changes soon, for everyone's sake.
@s s that’s an excuse. Scientists are finding out a lot of ‘crazy’ is actually caused by inflammation. (I.e. it’s a physical malady not ‘mental’). It’s a cop out by ANY doctor to assume ‘’psyche’’ and pass the buck, at least without doing in-depth search.
@s s some people are for sure.
But they are doctors out there who if they don't know something they assume the person is crazy.
These people should not be called physicians, they are a joke.
Feel so bad for Eileen because she hasn’t even lived her life yet and she’s going through such a debilitating illness.
I had this disease as a teen and it changed the course of my life. It was very traumatic tbh. I feel like the medical professionals thought I was crazy.
I was diagnosed two years ago when I was fourteen. It is devastating to young people. I only have one friend and rarely talk to people. It’s a cruel disease that isolates it’s victims and leaves them unbearably lonely. I’m so grateful for my mum, if I didn’t have her, I’d probably give up.
@@Lauren-nr1wkare you feeling better?
@@ZiggyonMarsare you feeling better?
It's so sad to see. I was diagnosed with MS not too long ago and I know what fatigute and simultaneous pain feel like. It's near impossible to describe the impact it has on wellbeing and mental health, meaning people will, sometimes unknowingly, put a lot of pressure on you in daily life. Keeping a job has been a challenge, it's a struggle every day and sometimes even healthcare professionals will dismiss concerns - a cold for someone with chronic illness isn't the same as a cold for someone who's otherwise perfectly healthy, for example. I really hope that ME/CFS will be better understood sooner rather than later so that everyone affected can get the help and support they need.
Wow! Thanks to the guy, who bring this illness to the world stage. Our fellow human beings, who are considered healthy, will never understand anything in relation to this illness, cause they are not living on a low battery supply. All i can add, is my people suffering with this illness, you are not alone, even though i am suffering with thyroid, just enjoy life with the little battery you have left. God bless & love you all.
Every time I get a cold I relapse and get much worse for months.
I remember seeing this video last year, but thank you for uploading it again. Our suffering must not continued to be ignored. We need all the help we can get.
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on RUclips have the permanent cure to eradicate Shingles virus permanently
I was diagnosed with both chronic fatigue immunodeficiency syndrome and fibromyalgia in 2001, when I was 31. I have had to just deal with the unrelenting, pervasive, constant pain of the fibromyalgia since then. The unrelenting exhaustion of the CFIDS has been, by far, harder to deal with.
The most frustrating part has been trying to work. None of my employers have been sympathetic or supportive. None of them have allowed me to work mostly at home, even though it's doable in my profession. It's definitely hurt my ability to further my career.
Thank you for making this film and bringing attention to this horrible, and horribly misunderstood, condition.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth. .
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
I have heds autism ADHD fybromyalgia CFS heds is big link who do I see for this mcas
I was diagnosed with Me nearly 15 years ago then was diagnosed with Fibromyalgia as well 5 years later. The last 10 years have been hell being told 'i'm lazy' and 'its all in my head' on a daily basis. Wishing you could do basic tasks but being unable to is one of the worst feelings there is. My wish is that all people who have ME have more good days than bad and receive the support we need. Hopefully documentaries like this will help people to understand more about the condition and will lead to more discoveries to help.
I know how you feel; but God sees and He knows, that's all that matters. He will give you the strength to carry on.🙏🌺
I've had ME/CFS for 6 years. Life has drastically changed but I've learnt to pace, mostly. It's hard to accept; takes time. Thankyou to all involved with this great documentary ❤🎉
Its like watching a documentary about myself. Almost 4 years, and no diagnosis. I'm tired and hurting and I'm tired of hurting.
Show this video to a good doctor. I wish you a good life.
Me too, this is me in a nutshell. I feel so alone in this. Im fed up of complaining how i hurt all the time. I feel your pain..
I'm so sorry. Keep fighting for answers!
Love your name, Havok ! 😘
If you would like some help to heal, please read some of the other posts we’ve made. But, in a nutshell, eat well (organic), boil water, exercise as much as possible (without relapsing) and with sweating, and avoid all pharmaceutical medications!
In most cases, the diagnosis is ‘poisoning’ by drugs. Now, you can move on and start the healing process.
My mom has this illness.... it's really terrible. She had to change all of her life, all of us had to move out to apartments near by because living together was too much sensory input on her. She has been having constant feverlike symptoms for 4 years now. At least she has been able to get our of bed after 2 years of constant darkness and lying down in bed with closed doors, closed windows.
Now she is able to eat with us sometimes outside of her bed. She can sit in the living room.
You can't imagine how grave this illness is.
and when you live with a familymember with it, you completly forget what a normal life is.
When I see old pictures from a few years back where my mom stands in the living room watching a TV, it feels like watching another person. My mom would never be able to do that anymore -
she wouldn't be able to stand up, nor would she be able to watch tv. When she watches TV she gets dizy and tired right away, burning headaches and so on.
At least things have been slowly been going the right way. I hope that in 10 years maybe she will be somewhat able to be independent. I know how much she hates to rely on other people.
I started getting unwell in my thirties after two operations. Never been well since, I’m nearing middle 60’s now! It’s the fever’s & sweats & constantly hot 🥵 & cold 🥶 & it’s lonely.
@@florence1395 god I'm so sorry for you :( I'm sure you've tried B12 shots, but in case you haven't they have helped to reduce severe symptoms for my mom.
She also turned out to be very sensitive to plastic so switching out bedsheets and so on to pure cotton has also seemed to have somewhat of a result. Though we can't tell if it's a "cause-result" situation or just a coincidence......
I hope you have found some things that help you through the day!
Don't need to take 10 years. I have almost cured my ME, low thyroid function, seasonal allergies, bone and muscle pain, skin conditions, blood sugar issues, hair loss, tooth pain, mental issues, etc, etc with diet, fasting and vitamin supplements. Eat clean, mostly fresh plants. Fast regularly. Take high doses vitamin D3 (30000 IU pr day) with K2, magnesium and zink. Take sunbath without sunscreen. You should also check out your B12 level. I am 50 years old women and feel better than i have in almost 20 years. Do your own research, don't trust doctors and take as few medicine as you can, it's poison. Take a daily green smoothie with flaxseed and the vitamins and you will soon feel much better. If you have bone and muscle pain, you will probably feel worse before better, it's healing pain.
@@i.b.168 🗣 Yes, YEs, YES !!! Another sensible, person here people. This advice includes many of the answers to FIXING (not masking) your ME / CFS health problems !!! Follow this advice, it provides the only way out. ONLY people like I. B. can help you. 🥳 🤗 🤗
Raw lemon, and boiled water, as often as you feel comfortable. And you must move (exercise, and sweat). It helps to get the toxins out of your bodies. (Just do not over do the exercise).
@@i.b.168 What country are you from I. B. ?
I told an MD that I felt like 'a frail old lady' a few years. back. After a serious medical issue, my symptoms got even worse! Today, I'm having a severe episode, and I'm. mainly housebound, and require a caregiver! It's very uncanny that I found this documentary because these patients are presenting with SO many of my symptoms! It's tragic that this has happened to millions of people just like me.
Drink a sea moss smoothie, the effects are almost instant...the developed world has everything a kings plate 🍽️ could dream of but if you get a microbiologist involved they will determine nutritional deficiency and the vitamin pills go right out, ask honey scoopers, they find a lot of vitamin supplements from porta potties. Sea moss has 92 of the 105 minerals the body needs... combined with spirulina you get even amino acids. Fatigue is multiple things but if you can replenish trace minerals, you can live longer... alkalinity is the source of health
I tell people that I feel like 78 years old.
It feels like a serious virus, just after the fever where ur aching all over, and no energy to do anything but breathe
@@sMASHsound drink sea moss and spirulina...it helps flush out mucus and heals the body...the Ancient Aztecs used it for everything
Fluroquinolones
Have you been tested for polymyalgia rheumatica it causes severe fatigue body aches, frailty, a friend had this and it took months to diagnose, he went from a very active person to someone who seemed to age 30 years
I had a liver disease and experinced extreme fatigue for a while. That was the only time when i really thought i was dying. My body was just barely holding on and i'm extremely sorry for those who have it as a chronic case😕
Thank you! I’ve been told by so many doctors that it’s all in my head because none of the regular tests show anything. But after I got mono as a healthy teenager, I became a completely different person with multiple debilitating symptoms. Seeing this documentary makes my heart shout YES, I KNEW IT! Thank you so much.
Same here, I believe that is when mine started.. after i was diagnosed with mono years ago.. went downhill ever since then
@@LisaTrusty find out the antibiotic u took then Research ::: F.Q.A.D ( FLORAQUINILONE toxicity syndrome ) this type of drug has been killing 😳 since the 60 ,s UNDER THE NAME HYDROCLORAQUINE THEY JUST CHANGE THE NAMES AND REINTRODUCE IT AT A LATER DATE... they have done this for many years now ...... each time it is pushed to the people it seems to bring on MORE AND MORE MYSTERY ILLNESSES OVER THE COARSE OF TIME? ⏲ THAT go unsolved ? and we are to just ROLLOVERER and BELIEVE everything they say ,, 🤥 NOT ACCEPTABLE. !!!!
It was something mono-like for me too. There was at the time a breakout of mono in my high school. I got sick as well, same symptoms, but my test for mono came out negative. I never really went back to normal, though it took years for it to get worse. College drop-out. One of the best schools in the nation for my major and won a grant from the school too. I could not even walk to class, or walk back if I ever got there, so I had to leave. I’ve never been able to integrate back into ‘normal’ life since. That was more than 20 years ago. I have some better years and some very bad years. It never goes away and effects everything. I hate it.
Hi Claire, Just wondering, what you meant by ‘yes, I knew it’ ? Did you recover from the fatigue, etc. How long for ?
I had Mono as a child too
'My neighbors thought I had moved away' - this one got me. My neighbors thought I had been abroad with family for long stretches. I was right here. This was after a lifetime of having been a very active, very committed to community lifestyle. Now I have long covid and the two definitely overlap in some ways. One of the most difficult aspects has always been the general ignorance and lack of acceptance of ME/CFS even being real. (Seen as an attitude issue or depression, hypochondria etc). 'You look well, you must be well' . 'Get a new hobby, cheer up, try more exercise, you just need to get out more' etc.
Covid is helping with this dismissal issue some. Now there can be a bit more recognition and validation as dealing with a real illness among some, or at least perhaps not as strong or as immediate an invalidation. But still not that much. So one must deal with a societal kind of dismissal or shunning on top of the pain, weakness, fatigue, brain fog itself. All that adds to isolation.
It requires the cultivation of real inner strength to live with this, manage the necessary adjustments to impairment and still live well with tranquility and happiness.
Yes.
Well stated. TY
I have prolonged Covid last year. I still very sluggish most of the time. I would rather sleep. But whenever I ask my doctor he would just look at me like I am the laziest person in the world and ask me , "Your Covid was last year, what is your excuse?"
@@pieburwell3622 time for a new dr
@@morganwk2753 or a new country
Excellent documentary, I've had Me/CFS since 2008 and this is the first time a doc has given me hope.
Yes, this is a great documentary. I've also had ME/CFS since 2008. I was diagnosed at UCLA in 2009. Since 2008, I've never been able to work full time. However, I was able to find and practice a form of qigong that improved my health considerably and gave me back enough energy so I could at least work 3 hours a day. I had severe ME/CFS for 16 months at the start of my illness, but it's been mild to moderate for the last 11 years or so.
It's just hypochondria
I have had since 2006. Stopped work 4 years ago.
I have had CFS for decades now and I’ve always been looked at as suspect. It’s so difficult to explain
This documentary suggested by RUclips at the right time...
I've been having this for years. I'm still functioning, but the fatigue just sooo overwhelming and can't be explained.
This video is an incredible resource, thank you so much. I’ve been dealing with this weird condition for years.
Doctors dismissing patients is so infuriating. If you don’t know something, that is understandable. But to try to gaslight a patient that is already struggling so much is horrid. Sending love to everyone out there who is dealing with this.
Thanks for watching. We're glad you found the documentary helpful!
As someone who has an important person in their life who has CFS, it is also a struggle for us. We feel helpless when theyre having a really hard day. I hope future research will bring more knowledge, understanding, and potentially cure for this illness. 🙏 I just want them to have a normal day without feeling every movement is a pain.
Yes. It’s lonely for you, too. Because you want so much to make it all better. Bless you and your loved one for taking the high ground and hoping for treatment. Hang in there. You’re not alone.
It is most likely a childhood vaxx injury and the treatment you’ll want to find is for detoxing heavy metals. CFS is listed on many vaccine package inserts as a possible side effect, I posit that it’s quite a common one, I even had a formal diagnosis for it from my family doc in the 1990’s.
Try marijuana
I'm so glad that you believe your loved one. My husband has seemed skeptical and not very understanding of my symptoms and down days.
@Jim Harrington It is a big deal and exercise makes it worse or it’s not me/CFS.
Sadly, the ones willing to really listen to us are only the ones who also suffer from CFS.
I have been suffering from CFS for over 30 years. Thank you to all who have shared your experiences here. I hear you, I feel your pain & suffering from my own daily personal experiences.
May God bless you.
Me too, Mike.
This was very eye opening. I was diagnosed with me/cfs by the Mayo Clinic 4 years ago. I got mono when I was 17. I was a high school basketball player who also did 2 hours of yoga a day before I got sick. It’s been over a decade now and my life has fallen to pieces. I have many health issues and am now disabled at only 27. My dreams all have crashed down before me. I’ve fought with the cfs diagnosis because of how doctors treated it like it was psychosomatic. I now realize it may be a bigger contributor than I give it credit for. I’ll wait anxiously to see where they go with research and I’ll hope for days when I can move well again!
How are you currently? and. Hope you get better
I hope the people affected will find relief and that a treatment will be developed to cure them. My heart is with you.. be strong!
Thank you 🙏🏻
Nothing will be able to cure this. The sleeping part of my brain has been fried for 14 years now.
Thank you for making a documentary on this! I have watched your documentaries for years, and am also a sufferer of CFS. I am so glad to see more word spread about this illness.
I got chronic fatigue plus orthostatic intolerance from abusing caffeine of all things. I went on 4 hours of sleep or less for 2 years because caffeine made me feel alert enough to function, and I thought I could ride that wave forever. My body basically flipped me off and conked out and as a result I was basically bedridden for 2 years. It's important to treat your body right and give your body proper rest and not abuse caffeine. Caffeine addiction is insidious. I quit all caffeine for 2 years and sleep off all the sleep debt I collected throughout those years and started feeling better actually not too long after I quit, about 4-6 months in I started feeling a difference. I feel for people who have chronic fatigue. Feeling so weak that you can't even sit up on a chair for more than a few minutes, it's miserable. Made me realize the smallest things I took for granted. I hope all of them find an answer and can eventually fix their CFS.
ive had cfs since i was 10 (i am now 15) and im so glad that these days more people are becoming aware of this illness and doctors are taking it seriously now. my grandmother also had cfs, when she was in her 20s, and since at that time nobody knew what it was she never got the help she needed. my heart goes out to everyone who is struggling, and know youre not alone ♥
❤️❤️❤️
My fibromyalgia is hereditary, all the women on my moms side have it. It’s sad to think that everyone else suffered with less medical care, but in the end the only things that have worked effectively have been maintaining a healthy weight, exercise and avoiding foods that seem to make us sick.
@@MyDuckSaysFucc which foods are that?
@@twobrownbears gluten and dairy
Ahhh I hope,and pray for your strength 🙏🏽💕.
No matter what have hope.
I've had ME/CFS since 2014, although I had no idea what I was suffering from until my own research led me to the condition in in 2018. I was finally diagnosed last year in 2021. Thank you for this documentary. I'm only ten minutes in, but my eyes are tearing up -- I'm so touched that our stories are being told and heard. Thank you. I'm in my early 30's and housebound, dependent on my partner, and hopeful for healing. Thank you again for creating this, it means so much.
Did you even watch this documentary??? Lolol 🤦♀️
@s s lol. thanks so much, never thought of that, i'll just get to the gym stat then. (*sarcasm alert*). In all seriousness though, this misunderstanding is so common. There is something physically wrong in people with ME/CFS (did you watch the documentary?), it is not psychosomatic even though we don't look sick. Most of us do try to exercise before we know we're ill, and that ironically is what makes our illness worse. I did that for years and my health slowly deteriorated until I became housebound and found out what was going on. I think this is so hard for people to understand because for most people exercise is the answer and does help. It just really really really does NOT help those of us with ME/CFS because we have exertion intolerance - post-exertional malaise. If it was as easy as "fighting it" and "working out", no one would be suffering from this awful illness. It's much harder to learn to be in tune with your body so as to allow it the space and time to heal and rest. People with ME/CFS who do that (i.e. who stay within their energy envelope) generally may have their health improve or at least not get worse. It's really hard though because society's mindset is to FIGHT and PUSH and that's exactly what one has to unlearn to have any chance of living with this without extreme suffering or even possibly recovering from ME/CFS one day.
@s s Most sufferers try this approach. Some manage to make it work, but it takes months to years of falling back into illness
If you are not too damaged by the drugs (the pharmaceutical drugs), you may just be able to recover some of your previous abilities.
I have the same condition and pretty much recover by adopting a gluten free diet❤️ I seen many specialist and none of them have an answer. Hope you can try if you have no other option.
@@huschiperonni2463 I've been on a gluten-free diet for over a decade, before I had ME/CFS. Glad it worked for you.
I am 63. 25+ years....this has been my life/existence!!! Beyond horrifying.yes suicidal thoughts are frequent. 🙏 For cure and understanding. God bless and help us all 💜🙏✨
Oh my gosh, I am so glad I found this. I’ve been struggling for years. There is no diagnosis or any help. I’m very grateful for this video because it makes me feel less alone. Though I wouldn’t wish this on anyone.
Thanks for watching and for sharing your thoughts on the topic.
Thanks so much for this documentary. I hope a lot of doctors, scientists, and politicians are watching this too! There are a lot of us suffering and getting little to no help at all! Thanks again!
If there is one good thing about Covid, its the medical people finally realizing and doing more about these chronic conditions. Sad, but true that it takes a pandemic and tons more than the usual amount of people developing chronic fatigue and fibromyaliga.
🤣
It’s very true.
all mask breathers 😂😂
A FACT
Yes post covid is now giving recognition to this post viral disorder. Got it when I was in my twenties
the only thing i'm not tired of are these documentaries 😭
Sending virtual hugs and prayers around the world to fellow sufferers of this dreadful disease.
It's beri beri. Low b1
Thank you so much for bringing attention to this issue which has plagued families for so long without many clear answers.
I have CFS/fibromyalgia. This is extremely accurate. Today is one of those days. I can barely move. My bones hurts, I can never fully recharge my batteries.
I had post viral fatigue after covid which lasted about eight months. It made me realize what people are up against.
I recovered but I do feel nervous in case I get a virus again and the same terrible exhaustion returns.
My case was mild. I really feel for these people.
What is being called a mysterious "disease" is actually the fact that we are alkaline beings. We must stay at a constant 7.2 to 7.4 pH. Our super INTELLIGENT bodies regulate us at this constant pH. That is because we consist of 7 billion billion billion atoms, each one an electrical energy field because atoms spin/vibrate as positive and negative protons and electrons. We are electrical beings. Look up all the youtube videos and books that say so.
Many doctors know this. Watch youtube videos by Dr. Young. Read his book The pH Miracle.
Since we ARE electrical beings, then any dis-ease is electrical. 5G and microwaves hurt us. Our own bodies are the energy of 7.2 to 7.4 pH. Food is measured electrically as pH. We must eat foods that are the same pH that we are. That means eating lots of greens. Tomatoes, etc. Exercise burns up this energy so that a person could eat more acidic foods and not be hurt. Diabetes is eating too many acidic foods and not burning them off with exercise. So this acid just sits in our bodies as fat. Sometimes acidic foods show symptoms like mucus, colds, fevers, heart attacks, diabetes, etc. Dr. Young says ALL elements can be fixed by eating alkaline foods.
Thank you
After covid 🤣🤣🤣 such nonsense, you did not even think to use that term before. Only because the media programms you what to think, repeat and believe.
@@lotus___freedom they are talking about when they themselves got infected with covid. They aren't talking about a period in time also called "covid".
@@lotus___freedom Lol come on now; I am on your side in that the media and the creation of covid itself is a manipulation and they are lying about the real reasons it came about as well as the effectiveness of vaccines. However, even though its a man-made bioweapon intentionally unleashed upon us it is still a real virus; I've had it myself multiple times since I seem to have a weakness to it. Just because the creation of the virus, the overreaching government response to it and the media manipulation are all true doesn't mean the virus doesn't exist and has real consequences if you get it.
How sad it is to be shunned from everyone and in so much pain. I don’t have the energy to fight for myself anymore 😢
I’m close to being at that point. It’s scary and sad.
My partner Jessica has been living with this since she was 14. She’s 28 and watching this just makes my heart hurt even more. I’m devoted to my partner and looking after her but I just wish that one day we can find some way to solve this. Chronic fatigue is devastating and while she has come to terms with it and does the best she can I can still see the pain it brings her.
I hope we one day find a cure or even a way to improve recovery because living with this must feel like a death sentence for a lot of people :/
There is a cure for that. Eat raw fat, lots of animal organs and seafood, and adrenal fatigue will slowly go away.
tell her to get pregnant , it's the single know remedy for young women ....I'm not joking this is a statistical truth
Adding insult to injury with CFS and similar are people who reply like the other two here, being wholly dismissive and providing zero scientific studies as reference.
I have a chronic condition after an injury in the Marines, and I’ve lived with it since 2006. It is awful, and I used to need a cane. What has helped me is as follows.
1. Accepting that my body is not the same, it won’t be the same, and figuring out how to navigate life this way.
Example: I used to be very physically fit and active, and cannot exercise like I used to, so I had to find different ways to exercise. Truth be told, I’m fitter and more active than my peers but it’s nothing compared to my old body. I had to let that go and accept what I can do as I am.
2. Find a good regimen of medication and supplements.
I was able to stop using a cane with the right painkillers, and we got me on the lowest dose that is effective for me, spread out all day rather than a larger dose once a day. I read scientific articles about my issues, such as the accompanying chronic migraines, and how things like magnesium and ginger can help so they are taken in addition to my prescription. Pay attention to dose in the research articles, and also the type. For example, you may find that Supplement X is often sold as a “whole leaf” variety, but the study was using the “extract” version of Supplement X, so be sure to try the right format.
3. Being easier on myself for doing things like taking the elevator instead of the stairs, for setting a main goal + auxiliary goals rather than an all-must-be-done-today to-do list. I channel my “go go go get it done go go go” mentality/personality into my work rather than having it apply to all parts of my life like before.
4. Check back with docs and specialists, especially for updates about the condition and their ideas about compounding factors.
I found myself super tired and losing my hair and having my lymph nodes swell up, and I was concerned this was cancer as I’m at a higher risk (due to where I was stationed in the Marines) and had to have tumors removed before. I hated this because I was already fatigued anyway, already in pain, and now I’m even more tired and achy?
It turns out I also have an autoimmune disorder and I had become iron + B12 anemic. Once I started working on the iron and B12, I went back to “normal” (not “true normal” but “my normal”). So it wasn’t that my underlying condition was worsening, it just felt worse because other stuff was happening. When you have a chronic condition that a lot of people don’t understand, you tend to blame every new symptom on the condition to avoid going to the doctor and going through the annoying procedures. But in this case, it was really helpful so I recommend keeping this in mind.
5. Keep on top of my health.
Similar to point four, I eat healthily, keep my weight in a healthy range, and do daily exercises. This can’t cure what’s wrong with me, of course, but it helps prevent ADDITIONAL problems from building up. Obviously it isn’t perfect (see above point), but at least it is helpful. As I said earlier, on paper I’m actually fitter than my peers. I joke that I’m the weakest strong person that you’ll ever meet.
6. Find something worth living for, that you can also take a break from if needed.
This might be dark but it’s hard to want to keep living when you have a body like this you start wondering what the point of living is.
For me, I love teaching and I’m able to do things like sit and teach, keep the lights off in my classroom (helps migraines), and my students are good about keeping quiet/attentive when I have to speak more quietly on bad days. I love what I do so even on my worst days I still get animated and into my lessons despite the pain and fatigue.
I also have a RUclips channel and it helps me connect with people. The channel isn’t big but it is a fun hobby for me and I enjoy meeting new people. Speaking of, your partner can feel free to contact me on Discord at DoubleEspresso#9310 (you may as well if you have follow-up questions about this, as I don’t always check YT comments).
I also decided to go back to school to get my Master’s in Psychology. I’m only taking one course per term and I am really enjoying it!
All this being said, it still sucks, it doesn’t cure the fatigue and pain, but it has made things more manageable. All the best to you and Jessica 🍋
Seriously a diet of fat and organs would make me throw up. Pregnancy is no cure belief me, I've had four pregnancies and am not improved one bit.
@@nomadgigi4051 Have you tried it? That's your natural diet. Social conditioning is what keeps you sick.
This makes me feel like I’m finally not alone! So glad there is research on this debilitating illness. ❤️
I'm going through almost identical situations,
I've been living this for 2 years,
4 months ago I started eating red meat, around almost 100% meat only,
I had some improvements.
I cut out all processed foods, when I cut I feel better,
Because it was already possible to do something, like taking the garbage in the trash,
Research the ketogenic diet, and carnivore,
I'm just sharing my situation, hope it helps
Research marijuana
Watching this , makes Me angry that this illness which I have had for over 20 years has so little research happening . We need a diagnostic test . We need treatments. M.E destroys lives . Why is it ignored ? Long Covid is getting a lot of attention .M.E sufferers have lived with a long Covid type illness for a very long time . Sadly We have waited so long for scientists and doctors to give us a glimmer of hope .
Yes! I knew the second I heard "long covid" interest would raise, such crap but also yay...
Drink sea moss and spirulina...all energy is from the Sun, plants are the only things on the planet to store the sun's energy, Sea moss has 92 minerals, the body needs 105 spirulina provides excellent protein and b vitamins even copper iron and magnesium. Low sodium, low iron and low b vitamins are what can create symptoms of chronic fatigue and it doesn't help if the patient is only drinking 1 litre of water per day...so a lot of complications can be resolved by giving the microbiome what it needs to perform what over 3 million years of evolution has given us
Michelle Shelly Style Whether or not there is a diagnosis YOU KNOW you are ill. NOW, it is up to you to change the outcome. Read the comments on living a healthy lifestyle. Fashion over 60 just might be what's killing you. Get back to Nature, dump the makeup and petro products. I wish you well, it's up to you.
Because i know 4 people who have claimed they have m.e get full benefits yet ive seen them run up stairs go on holidays and music festivals etc.
@@chinookvalley
I find your comment ill informed and insulting. I've used no petrochemicals in or around my home for decades, have used no cosmetics for many years, have used only the most organic and safe toiletries (mostly homemade), enjoy nature when I can, also have the pleasure of being with two small companion animals, and eat a clean keto diet with intermittent fasting. My me/cfs is still out of control and yet, according to you, getting well is up to me. Do you have anything of value to add or just more glib platitudes? Blaming the victim is vile.
I hope to find Drs that are this passionate some day.
Ditto ❤
Thank you all for making this film. I have had M.E. for 36 years, and although I have managed to keep some balance for a while now and been able to work part time, I still struggle daily with pain and fatigue. If you are suffering and do not have a diagnosis, I just want to tell you that I believe you and know that you are not faking it or making it up. It took me 2 years to find a medical professional that believed me and those 2 years were terrible. Don't let anyone torture you into believing that it is maybe all in your head. I Believe you! You are in need of help, and do not deserve to be sidelined by doctors or consultants that belittle you because they think they know everything about the human body, so if they can't find anything amiss in your blood results or in the neuro tests they put you through or the swallow test or the adrenaline tests or the cat scans or MRI scans, X-rays.... basically if the fob you off with "You have nothing wrong with you, all the tests tell us you are fit and healthy and it's all in your imagination" Tell them they are idiots. I know you are ill and I can see you. You are not invisible to me .
Thank you to the actual Drs and scientists trying to help us. This documentary gives me hope.
Take your B Vitamins and some sunshine. Works wonders!
@@25marshalyn no it doesn't. I still have a chronic illness. That's not how it works. It's not a simple vitamin deficiency. How I wish it was. This disease has stolen years of my life.
I'm 34 now and had mononucleosis when I was 17. It was a pretty bad form, my liver and spleen got swollen badly and I had to be in the hospital for 10 days.
After recovering, I immediately noticed that something has changed. I couldn't eat breakfast anymore because I would just throw it up, constant feeling tired, sore muscles...
Now, at 34, I still can't have breakfast, I still have muscle and joint sores, still have a low energy level. I force myself to go through the working week and then I crash during weekends.
I thought this is some sort of depression, but after seeing this clip, everything makes sense.
Try and eat ”clean” food, no processed, no sugar, no bread. Vegetables, meat from grass fed animals, eggs, butter, olive oil. Small amounts potatoes. Sometimes you can eat small amounts of anything, but if the ground is solid cheating sometimes is ok. You must have better energy levels, so you can do nice things and meet friends and family.
You might have fatty liver disease
Epstein Barr virus (aka mononucleosis) still isn’t very well understood, but the damage it did to ur body might still be around. Please see specialist doctors on this, idk how you just casually ignored permanent fatigue for 17 years
I have been dealing with this for 6 years. Although I get better with time, I still have some bad days.
Remain balanced and grounded 🧘♂️🙏
Symptoms will continue to come and go, change and worsen without proper treatment. There is an underlying infection responsible for your health matters that needs to be identified, treated and fully eradicated.
I have suffered with cfs for over 40 years. I'm now in my 70's. I've been thru the, "you're lazy" attitudes to "you just need exercise" advice, to referral to a psychiatrist. Mayp Clinic's best advice in 2008 was to arrange your around it.With the surge in cfs patients post covid, I hope it finally gets the atten this devastating illness deserves.
I went to Mayo last year and they said the same thing:( recommended the usual pain meds, anti depressants, therapy, mild exercise. I was extremely disappointed
You must have incredible inner-strength to still be fighting after 40 years! I developed ME 34 years ago... exactly half of my life 😔... but - like you - I'm still here... every day a fight. More power to you dear lady... ❤️
I find the crashes horrible but the lack of understanding more frustrating and painfully exhausting. If only people who don’t understand or are uninformed were more polite then perhaps we would have a fighting stand for acceptance. My speech goes completely muddled the more I become exhausted and I come across as drunk. Fighting pain, mental and physical exhaustion and cognitive skills all have been with me since childhood and I am now fifty six. I live in the UK and where I live I might stand more chance of getting help if I lived in the Outer Mongolia region.
Same in Israel…
Same 56 out in 🇨🇦
CFS and fibromyalgia is very treatable I'f you understand the origin and the why's and how' these conditioned developed.
So you say. If you had a cure you'd be famous and wealthy.@@dr.jessebautista4658
I have had CFS for as long as i can remember (possibly caused by a viral infection I had when I was one year old), but only got diagnosed when I was 13 years old. My CFS has gotten progressively worse over the years. I am house bound and almost completely bed ridden. Everything I do to survive is utterly exhausting.
Thank you for putting out this documentary DW, It has given me hope that people will have more understanding and there will be more research.
hello ...last 3/4 years for me utter exhaustion ..had more blood tests and seen more specialists than ive had hot dinners ... keep fighting on eva much love from australia
Antibiotics
@Eva Harris, I totally understand! Two words: Me too! But, I try to get up. I do have a caregiver now. That took quite awhile to find out how, then had a hella time for two years because it took me several agencies to meet her. I told her a lot about me, and she knows I try to do stuff just to keep living. There's a saying: 'A body at rest, stays at rest.' So, I go thru the pain of utter malaise & fatigue, but get angry at it, and do as much housework as I can, I keep my toilet, bathtub, and sinks spotless, and run my own vacuum. She gave me a pair of two pound weights, and she'll bring me leftovers from home on my worst days. I'm very grateful for this woman and at this point, trust and highly respect her. I showed her this a few days ago, so she'll see what others are going thru like I did when I found this for I didn't know about cfs either. After several ER visits and complaining to several MDs & RNs, I gave up. But, I didn't give up on myself! Then, on this video, it said to try to keep moving your limbs too. I feel a bit better after pushing that vacuum or running my own bath or cooking a simple meal with my caregiver assisting. Even just having to let her in everyday seems to help! She's not negative or lazy. She's not stupid and seem to have things so she won't steal dumb stuff like some have done to me. I wish her many years of vitality and good health, and all the best life has to offer. This I wish for all who didn't cast me aside as I lay in filth and a house that turned into a time capsule! This thing is SERIOUS BUSINESS. I'm not lazy! I held great jobs before my disabilities! I've worked among top surgeons and their PAs % RNs! I've made and sold R/X glasses and dispensed contacts! I've delivered packages and drove a semi for 30 years plus taught my SON to drive the thing, yet I don't think I'm all that great! I'm average but if I could do it all over again, yes I'd bring children in this world but the guy would have to have intellect, raw ambition and more! I would be hard as hell to get, and never wear my heart on my damn sleeve! Maybe because of my serious work ethic and determination, that could have had something to do with it and the fact that even today I have to fight like hell, and advocate aggressively for myself!
I’m so sorry. I got head lice followed by cocsackie virus when I lived in a dv shelter in high school. I’ve been ill ever since. I was already born disabled from a meth addict mother at birth so this crippled me. What’s worse is people think I’m very bright and will push me harder than I can handle til I collapse. Now I’m permanently disabled and use a wheelchair on good days. I still have a love of beauty so I create dystopian outfits and on less symptomatic days I play cozy video games. But my husband does most of the adulting around me like I’m an island. I’ve lost my dignity because people just think I’m lazy. Don’t you just think that word hurts worse than anything? Lazy. We’re not lazy. We’d climb mountains in our dreams and kayak the Colorado if we could. I’m learning that most people are ignorant and selfish and I can’t educate them on what we go through. We just have to hope that there’s a little piece of safety, beauty and resources left for we ghosts in our homes. *hugs
I suggest Biblical fasting, it can heal you, Hope your journey leads you to a miracle from God,it has happened multiple times with other people.i Pray you will be healed in Jesus name,
The battery analogy is a good way to describe it.