I'm so debilitated by fatigue. I fight depression just from the stress of not understand why I feel like I'm dying just to do VERY simple tasks. I was so hyperactive almost. Everything he said in this video to help, I am doing except possibly the healthy eating bc most times I am too tired to either shop for food and def too tired to prepare it. I'm always worried. I'm in my 50s but I shouldn't be helpless.
Im sorry know the feeling 😢 I’m only 25 and exactly the same. Waiting around for doctors appointments not knowing why you feel this way. It’s so frustrating 😞
DearDancer. I have chronic fatigue syndrome too , dear. In my case it was years of stress. I was a caregiver to a patient. Just as he was recovering from organ failure, I got sick. Now he takes care of me. I spend hours every day sleeping or resting. I have NEVER DONE THIS BEFORE. I NEVER LET ANYBODY DO ANYTHING FOR ME. MAYBE I SHOULD HAVE. BEST ADVICE IS GET SOMEBODY TO SHOPP FOR YOU ONCE A MONTH. MY LTR HAS CHRONIC FATIGUE TOO. I HE STARVED HIMSELF FOR 3 YEARS BEFORE I MET HIM. HIS ORGANS FAILED. NOW WE ARE TRING TO EAT HEALTHY. LOTS OF VITAMIN SUPPLEMENTS. YOU WILL RECOVER
I think it’s important to note for people that graded exercise therapy can make many of CFS/ME patients worse, especially if we push ourselves too hard, too soon, which is easy to do. A better recommendation may be strictly aerobic exercise (and perhaps stretching and/or mild weight training keeping heart rate within aerobic range), to tolerance. Tolerance may increase very slowly over time, but do not push it, or the post-exertional malaise will kick in, and be difficult to settle down again. I find following exercise recommendations for POTS to be very helpful. So far, I hve worked my way up to short and gentle walking, though I still struggle with tachycardia and post-exertional malaise from taking a simple shower. I hope that the walks will eventually help me with showers. Easy does it, going slower means getting better faster. Good luck, everyone!
I have a plastic stool for when I'm washing my hair in the shower. My tolerance dipped. Like, I can do "regular" stuff for a day (exams) but then I crash for 4-7 days. It's like I'm running purely on willpower. I also lose vision temporarily and my head always hurts. Can't tell if it's this, my existing conditions, or a neurological condition. Or a combination. I'm not diagnosed though. How does testing work? Can rhuematologists evaluate me?
Graded exercise was based on fraudulent data and is now contraindicated for CFS. NOBODY who has ME/CFS can benefit from GET. It makes the condition worse.
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I have suffered from CFS for years due to extremely stressful circumstances. It's terrible to feel drained all the time and doctors I've seen tell me it's just aging.
I am older also and the last year I have been so tired! My blood work is good. I had a epidemiologist increase my Levothyroxine for sluggish thyroid. But one thing is I am always cold! Like freezing especially in my feet but BP is good. Hope you feel better soon. Life is crazy!
It took me over 3 years to recover from it. But I still need to get enough sleep. Otherwise symtoms come back.For those who are suffering, stay strong and get well soon Friends!
I totally agree with your assessment. I was finally diagnosed in my mid 30's. I am now 76 y/o. The worst thing is that I look fine, but am 100% disabled. Remember, laughter is the best medicine.
Same here. I was diagnosed at 25 after having mono. I’m now 53 and it has been rediagnosed as Fibromyalgia in my 30’s and 40’s. Now I am being swept under the menopause bus. I’ve just adjusted to living in chronic pain and fatigue. Every doctor has an excuse as to what causes it. And wow when they find one thing like a bout of low iron, or allergies they blame that too. I just need someone to fix this. Over 25 years of chronic pain and fatigue and brain fog. Life is too short to feel this way.
Chronic fatigue syndrome isn't fun at all and it's not a joke. We're not lazy people. It's our bodies just don't want go. I already have had rheumatoid arthritis for almost 19 years now and osteoarthritis and other medical conditions. Hereditary disorders believe me I know all about that. I feel like a medical experiment in a cage because I have so many medical conditions and disabilities and limitations already. I don't even want to be diagnosed with anymore. It's stressful enough with everything I have and being in excruciating pain and suffering from the minute I wake up till the minute I go bed. Then I roll over and the pain in my spine and hips wake me up. I'm overwhelmed with everything and sometimes I get tired of fighting to just stay alive. Straight truth.
Hi Kimberly, I'm sorry about your health issues! Your probably sick of listening to doctors but I'd like to tell you about Dr Berg, he's on RUclips and he's made some short videos about chronic fatigue that helped me, hoping the same for you! Love from Australia!🌼🦘🌼🦘🌼🦘🌼🦘🌼🦘🌼
I'm slowly loosing my ability to walk completely. I have accepted that I can no longer walk anymore. I walked as long as I could. God knows also that I can't keep trying to walk. I've had 46 falls already. Everyone expects me to keep doing everything like I use to be able to years ago and I can't do everything anymore. I'm waiting patiently for my motorized wheelchair that their building me. I laid this heavy burden at the feet of Jesus Christ. I'm stuck in bed in excruciating pain today and my hips, spine and knees don't want to hold me up today so I'm in bed trying my hardest to rest and not think about the excruciating pain in my bones.
@@kimberlydavis5034 I pray that the Lord Jesus Christ would heal u. Believe and trust that he died for ur sins was buried and he rose again the third day. his blood washes away all ur sins. He’s coming soon and u will get a new incorruptible immortal body
Most (or all) the people I know who have suffered from CFS also have fibromyalgia and have a history of prolonged trauma and stress. THAT is the underlying factor and the link. Adrenal fatigue is also related. See Dr Berg on naturally supporting the adrenals. That's what has helped me. Eat healthy, adequate rest, build joy, destress as much as possible,.and support/nourish the adrenals ....prayer is also very helpful.
It is unwise to generalise so greatly. “THAT” may be the the underlying factor and link that you can see in the group that you know. However, that is not relevant to ALL sufferers of CFS. HPA axis malfunction, together with immune system problems, serotonin imbalance, and viral infection (plus others mentioned in the video) play a hugely relevant part too. Prayer could be grouped into anything that brings positivity and joy to someone as a useful tool - such as walking in nature, building joy as you say etc etc or a placebo effect. Long Covid is a newly discovered condition creating many CFS type symptoms and it may be that CFS is broadly related to a viral syndrome from some point in a patient’s history.
@@kitdriscoll1288 I appreciate that’s what you’ve experienced in dozens of cases, but in millions of cases that there will be - trauma and stress will not be the determining factors. That is a statistical impossibility. It is what you have experienced, not what all have experienced. That’s why the contributing factors are more varied and very specific - as detailed in this video and as specified by experts.
Amazing how it was regarded as being something we just imagined and we should pull ourselves together. I was diagnosed 15 years ago but it took a long time to get there. Thank you for explaining ME/Fibromyalgia. Perhaps now we will be taken seriously when we are not well.
Graded Exercise Therapy is extremely outdated (yet still mentioned here). I'm sorry, but don't expect to be treated any better with ME than in the past. The medical profession still lives there, unfortunately lol
When you hear cbt/get as a part of a treatment plan for cfsme, turn away as fast as you can. The largest study on cbt/get by the UK on cfsme, was eventually after hard legal work to get the documentation of the study, shown to have results falsified and actually harmful to patients. If cbt/get was so good for immune disorders, why isn't it the main treatment for HIV? Because they don't want to take patients seriously even though there is plenty of physiological research to back cfsme up.
@@lindatannock yeah while I was in the best shape of my life and a personal trainer I literally had a doctor look me in the eye and tell me to fix my issues I just need to excercise and eat healthy. I was stunned.
I'm done...my condition has grown so severe my body basically has no muscle left, and it's just been so hard. I've been secretly crying in my room everytime I see my body in the mirror, when I get palpitated and dizzy just by standing and my legs wobble. I don't have any hope of recovery anymore, I have lost everything because of this disease. My clothes just are too big now, and I have so much loose skin I am thinking of wrapping something around myself when I go out. I am so tired and honestly depressed because no matter what I try, no matter how positive I stay, it keeps.getting.worse. I...I have not said this to anyone except the strangers on the internet (I mean you lovely people). I have been praying for a car to hit me, or a poison in my food or pills. I am constantly wishing for death because I can't live like this. I am holding on one last strand that maybe some doctor can pull a miracle and help me, and I am giving it 4 months. After that...I rather be at peace and ask god to forgive me, than to suffer and be a burden to my family. Has anyone here, actually recovered?
This video seriously needs an update... Please anyone wanting to know the latest information available, please do your research, read the comments below and ask questions of your doctors and specialists... Treatment should be tailored to your needs... GET may not help and may even harm you... This breaks that often quoted rule = FIRST DO NO HARM. Please make sure the people you ask to help you are up to date with treatments etc. Blessings, Dot
What is interesting in all of these videos is the total lack of recognition of the role of detrimental drug side effects (ie. GI tract and microbiome damage) or nutritional deficiencies that result from a diet of ultra-processed, high sugar, high omega-6 diet, along with dairy and gluten, common issues related to this and many topics like gastric disorders.
OK, you have a point, but once you have repaired the damage (In my case, SIBO, SIFO (candida), Leaky gut leading to intolerance of dairy and grain.) After repairing all that, I still have fatigue. So I agree that things are worse due to the impacts of gut health, but even long after, the problems can still persist
This may be true for some sufferers, but then it is also true for some non-sufferers. It is not a precursor or a cause of ME/CFS. I think you need to be careful when you make generalisations. People with this condition are desperate to feel better, and it's unfair to offer a solution, which at best will only be useful to a few of them
I was diagnosed at the age of 24, I've had this since September 2019 and it still runs my life- thankfully not as bad as it used to be but I've had to limit how much I do massively. Before CFS I had two jobs, one full time and one part time, have my horse to care for and would also help friends with their horses. Have since had to accept that I only have one job (which I struggle with at times) and still care for my horse with help.. luckily I have been able to speak with a specialist but my last appointment with them is next month.. This is an illness I wouldn't wish on my enemy
@@mulanimulani3483 mixture of both, lots of different tests and blood tests to rule everything else out and once they'd ran out of everything else it could have been I was diagnosed and referred to a specialist
Thank you for your response. What type of specialist do you see? They’ve ruled out all the auto immune deficiencies for me . My doctors believe I’m just lazy but in reality I’ve always ran low on energy since a child.
My teen son developed CFS and POTs and depression after having Covid last May. We found an amazing immunologist who is the one that confirmed the diseases and I am seeking out ways to help support my son. Thank you for the information.
I’m 32 and have chronic fatigue. I saw an excellent alternative medicine practitioner that treated my adrenal fatigue and gut. Also had me eat clean. I let myself relapse with too much stress and too little sleep and poor diet. Now I’m trying to get back better again. Unfortunately I think once you have it you have to maintain for the rest of your life. But seriously get your son to an alternative doc. Western medicine can not help with Chronic fatigue. Drugs are not the solution.
I was diagnosed with Fibro/CFS in 2005, then found Dr. Jacob Teitlebaum, read his books then made an appt. at one of his clinics. I was pleased with the extensive testing that was done there and the answers I desperately needed to understand why I felt this way. This is a great video Thanks For Sharing!
I accidentally found out about Hidden Food Allergies (Intolerances). I had a delayed reaction to the Corn Protein (High Fructose Corn Syrup , Corn Starch , etc.) and Dairy. People can have this problem with any food that they eat daily (like Soy additives in processed foods). Talk to a doctor in Integrative Medicine. Many major universities (Johns Hopkins , Duke University , University of Arizona , etc.) have an Integrative Medicine Department.
I've had this since I was a child, I have always been exhausted and needed more sleep than most. I was also diagnosed with Extreme Anxiety and Panic disorder as I got in my teen years. I am in my 50's now and the anxiety has morphed into being apart of who I am but it's not the same as it was when I was younger. My anxiety now consists with depression and isolation which is the total opposite of my teen years when I was horribly scared of being alone. Now I love being alone, I have always been weirdly sensitive and feel others emotions which causes anxiety and depression. Almost makes me LOL saying it all out. Ain't life grand!?!? LOL!!! Seriously though, I grew up in the 80's and mental health was a hush hush thing, my sleepiness made me miss a lot of school. I would be up all night with anxiety and then exhausted the next day. Horrible way to live, glad I outgrew that. Yoga and mind talk help me so much.
Who told you the story of my life? I swear I could have written this post myself. It can feel nearly impossible but do try to stay in touch with the world, friend. The isolation is so very tempting (I know; I am actively trying to pull myself out of a spell 🙂) Life was meant to be shared. I hope that today you can find your way to the sunshine for a bit of peace and a smile.
@@JsPrittyKitty That was the sweetest reply, thank you! It's a daily battle to stay in society. I can't even watch the news any longer, it is just too much! You take care as well! Prayers you continue to win in your battle!!! Much love!
I can remember being so exhausted that I couldn’t lift my head off my desk. Early grade school . I also have SAD and depression among other things that go along with fibromyalgia.
I’m reading this with tears. I’m also in my 50s and this illness and depression has ruined a lot of my life. I’m no longer able to work although I hope to do some volunteering soon.I, too also feel others emotions and I’m annoyingly super sensitive. I feel embarrassed at times as like you I grew up in the 80s and it wasn’t a condition you shared with anyone. In fact, I felt a lot of shame and still do at times. I wish you well.
Please update this video! The National Institute for Health and Care , NICE, (British) have published new guidelines for ME treatment. GET (graded exercise therapy) and CBT are NO LONGER RECOMMENDED!
I've read in many many studies that Cognitive therapy and graded exercise therapy are no longer recommend for ME/CFS. Can you make an updated video please?
People who recover from (or at least get better) it do exercise bro. I believe further research needs to be done. No one can give exact treatment plan yet.
Been sick pretty much all year, fibro runs in the family was diagnosed with it 2 years ago. Sleep 12-15 hours a day and am still tired, tried other ways of sleep as well. Lymph nodes always swollen, stomach always in pain and i work. I go to therapy, i take the meds, i do as told. Nothings changed. Starting to think it wont change been so tired for nearly 7 years now, nothing i try works.
@@Nealiousgayus I don't know where you live, but there is a Dr in Las Cruces NM who has helped a lot of people using vitamins and minerals. (See Arthur Berkson) Somehow chemicals do not seem to help CFS. He does a lot of testing to determine viral loads etc. As long as you are on an antidepressant you will never feel better. It is a Dr go to when they dont know what to do....
oh its physical...I have it and it's awful, I used to be a marketing manager, was a party girl and loving life...in 2013 I got very poorly and unfortunately mis diagnosed with a viral infection over several visits to the doctors over 6 weeks..I eventually got rushed to hospital and there I was diagnosed with meningitis, and then 2 days later I was diagnosed with glandular fever and my liver packed in..let's just say I was very ill.. ok so 6 months after recovery, I had to go back to the doctors due to feeling the same tiredness that I had experienced when my liver was down...the doctor said it may be linked to the glandular fever that went undiagnosed therefore left untreated..after another 4 years of absolute misery, I was diagnosed with M .E (chronic fatigue) I've now had it nearly 10 years and its destroyed practically everything I was before and probably what would or could have been my future. lovely to see that people are interested and giving input it really does help. The more people who know about the condition the better to help understand how to help a loved one or friend with it. Thanks for the upload 😊
@@lipsyloo I feel like I lost my life as well. I unfortunately had a baby, a toddler, and teenagers too. Unfortunately they had to suffer along with me in a sense. Prayers for recovery.
@@kaykayyyyymwaa I'm sorry to hear that, I only had the one son who was about 7 at the time so I dread to think how hard it has been for you and the kiddies! Thank you and I hope you get more good days than bad and also sending prayers your way 😊😊 thanks for your reply Xxxx
I believe my symptom onset was after being hospitalized with untreated Strep pneumococcal pneumonia that resulted in becoming septic. I was told that my organs were shutting down. This occurred during a very stressful time in my life with a new baby, a toddler, two teenagers. I was attending school full time legal studies with a 4.0 and this happened right before my last semester. Plus a long time partner (father of my two youngest children) who relapsed back into his addiction. I was attempting to obtain custody of my (step) son, his son after his mother and he both lost custody of him in a neighboring state. Needless to say not having help or seeing him until he was back in recovery. Bought a new house too big to take care of alone with a yard too big to care for working anywhere from 40-70 hours to afford my house. Needless to say it was years of constant stress from multiple directions at all times for YEARS! I have not been the same since. I feel like I'm literally dying sometimes, or just waiting to die at other times when I am unable to socialize, can barely make any appointments, plans, or obligations without trying to reschedule or cancel as I never know how bad I'll feel from day to day. I'm praying to God that he will let me recover to at least raise my youngest children and know my grandchildren. Prayers that we can all recover. Amen.
This is great info. My doc believes I may have this but hasn’t given me the diagnosis. I have been in great health until my last military deployment to the desert. From that point on, it’s gone down hill with a myriad of issues. Recently fatigue has been overwhelming. I am a person who retired up to 21 years the military worked out around two hours a day. Now I struggle to complete a 30 minute workout. I am wiped out by doing simple task, such as shopping, laundry, or a few flights of stairs. I work 12 hour days, and when I get off work, I am absolutely done. The second I stop moving I am done for the day because I’ll fall asleep or struggle to get up and moving. The only way to describe it is I absolutely exhaustion, mixed with depression.
I was diagnosed at 14 with CFS by my therapist. But I’ve never seen a sleep specialist. There’s like over 100 sleep disorders right?? I’m getting on my husband’s insurance, and getting a referral to a specialist. I also have a panic disorder, pcos and add. Been desperate for peace for as long as I can remember.
I was diagnosed with CFS a year and didn't think much of it. I have a compromised immune system and have had so since my teens. I got COVID and that was that! I also realised my mum has CFS but probably undisgnosed as she has an enlarged heart, adult asthma. This video was great education and an eye opener! I've also suffered Bell's Palsy 3 times in my life, have sinus disease, and a B12 deficiency. I didn't ask for this, but here I am. I use to ride my bike 20 kms a day. Now I can barely wash dishes.
So how do you manage to actually get a doctor to diagnose and treat this? Have had these symptoms for years and tell me doctors everytime I talk to them and they just run some regular blood tests and tell me I’m fine
Ger a referral to a rheumatologist. Get them to do all the tests etc. Once everything else is eliminated from your blood tests they may diagnose you with it. My doc gaslit me for years before I managed to get a referral. Insist on it! Good luck.
I don’t have cronic fatige syndrome, but now I know that the pain and fatige I fail isn't normal, I am not just "stressed or lazy" So really really thank you .
I’m tired all the time and I’m not even 30 yet. I’ve been diagnosed with anxiety and depression since I was 19 I’m 25 sometimes my body hurts all the time.
PLEASE Do more research before your videos because cognitive behavioral therapy and exercise therapy are no longer acceptable treatments for ME/CFS. Yes CBT might help with anybody dealing with any type of anxiety from having a chronic illness. But it is not a treatment for this condition. Mainly they thought that it was in people's heads and not a physical disorder so they thought that CBT and graded exercise therapy would be something that would help. Graded exercise therapy is extremely harmful for people with CFS and makes people much worse. It is good to move when you can when you feel as though you have enough energy but you need to Pace yourself. Pacing is a good skill depending on your level of severity. If you want good information about CFS please look into the open medicine foundation
Very well said. Couldn’t agree more. I was very pleased with this video as I heard him describing all the physiological aspects, until the end when he trotted out the tired old mantra of CBT and GET. He mentioned nothing about pacing, which may not be a “treatment” as such (there is no treatment for ME anyway), but it is a very useful management technique on a day to day basis, to help stay within your energy envelope.
Exactly and it’s disappointing that this video mentions CBT and graded exercise. It prevents it being a resource for sharing because it serves to reinforce incorrect perceptions and information, which can be much of the battle when dealing with this condition. One of the reasons those two treatments were axed from official advice was because ME sufferers were getting markedly worse, some even made bedridden. Then there’s the shaming and belittling practised by many alleged medical professionals. Continuous Professional Development doesn’t seem to be as thorough as it could be in medicine. The World Health Organisation defines it as a ‘Neurological Disease’ and that feels correct to me - almost all the symptoms I suffer from are neurology linked.
@@christinedunn5709 Couldn’t have said it better myself. This sort of video does nothing to improve general public and professional attitudes to what has been proved to be a neurological disease. So disappointing, because the video started out so well and seemed to clarify that this is a physiological condition and not a psychological one.
I don't think this is my problem. But there's definitely something wrong with me. I've always had insomnia. Depression and anxiety. But lately I've been so exhausted for no reason. I used to be able to get through work but need a nap after. Lately I've barely been able to make it through the day. I've had to sit in my car and take a nap at lunch just to get through the rest of the day. It's effecting my work, my family, and it's getting so my wife is starting to worry. I'm barely awake right now. It's hard to type.
I have CFS, it's genetic, my grandfather had it, my father had it, and I've had it at several points in my life both as a child and as a young adult then in my late 30s it hit like a mac truck. Doctors refused to diagnose it, despite now going on ten years of reduced function and decline. No one seems to understand the exertional exhaustion or the malaise. And honestly 1 day delayed recovery is "optimistic". If you exert then exert while in the exhaust phase and exert again you start to go down a functional spiral that climbing back out of can take days, even a week to return to previous levels of function and if those rest periods are interrupted by exertion.. then the clock resets. I have what is called disrupted sleep, it's clinically mapped in sleeping studies but no doctor was interested in looking further because there was no C-pap money to be made. I go through a full wake-sleep-wake cycle every 15-20 minutes a pattern that repeats all night. I do not feel rested by sleep. Still 99% of doctors don't want to diagnose it. Don't want to study it. And call it all in my head. I live with chronic ghost pain. I've had cognitive studies show declined working memory set. The loss of concentration. I do my best to regulate my life. I am least given full disability status but no one wants to say the word, cast the diagnostic. I have learned, over ten years, to manage it. But life calls on men to do lots of things, especially fathers. The results can be difficult to handle when people don't understand that I won't get better. No I am exhausted beyond all recognition. That when I get tired i lose proproception. It's awful. Not to mention the pain. The confusion. Lack of focus. Inability to "order sort" or "priority sort" tasks or duties. Nothing like going to open a door and it feels like it weighs a million tons.
It’s taken more than 2 years to feel like I can go back to living life again but I have a really bad immune system and every time I do something slightly more than my normal routine I crash again. As a 23 year old it’s so hard like I can’t do the exercise I used to do, I can’t go out as often and no one around me truly understands it when I try to talk about it - it’s a lot of ups and downs and experimenting day to day what I can do but I’m trying to fight on and continue as much as possible
Look into Hidden Food Allergies (Intolerances). You may be sensitive to certain common ingredients in processed foods. It may trigger a delayed reaction. Talk to a Doctor in Integrative Medicine. Many major universities have an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona , etc.)
This is so depressing. I was training for the taekwondo Olympics but I got IBS (potentially IBD) but now I feel like I have CFS. I just cannot even stand now or do basic day to day tasks. Moreover, I feel like I don't have my previous level of intelligence or brain functions. I find it so hard to concentrate in classsss
I have had ME most of my adult life, since my early 20s. Was not diagnosed until I was 50. I am now 71 and still there is no successful treatment. Unfortunately that is just the reality.
MorkieMom says she ate steak and recovered from cfs in 6 months. I'm like you, White Bird. I'd eat steak 2x daily if it would help. Why would I give up being a full-time real estate broker of 20 yrs., loss of income, $$ to doctors, vitamins, snake oil, can't attend a wedding w/o leaving early, same with church, & been there/still there? BUT everyone says I look grand. I appear well and wear a lovely smile. Perhaps my next career should be an actress. HA..
@@bernadettegreen7134 yeah, let's all eat steak lol. I'm thinking it possibly wasn't ME, huh? I gave up a 40 year career. Was exercising 10 hrs a week, and I'm an ex pro athlete. Docs still try to push the "deconditioning" nonsense 🙄
Vitamin deficiencies play a part, as a coeliac i found taking 10mcg folate,vit B12, multi b combination,vit c and iron helped me, I also took vit d and calcium. It helped perhaps 20per cent, helped slightly with brain fog,which was so bad I could only speak in one word replies. Swayed when I tried to walk a few metres. Find an integrated gp, a bit pricey. I also have aggressive RA, fibromyalgia, chronic fatigue and heart failure. Disabled at age 42, with no answers. Best wishes all. 🐨
They recommend Graded Exercise Therapy??!!! The PACE trial done in the UK that allegedly indicated that GET and CBT were beneficial in CFS. It was found at the data had been manipulated. Unfortunately, the CBT that they used, was primarily trying to convince the patient that there was nothing wrong with them, rather than being a supportive environment that helped one adjust to their limitations. GET may help chronic fatigue, but not chronic fatigue syndrome. There is a difference. Chronic fatigue can be caused by lack of exercise causing deconditioning. So of course gradual exercise would help improve that condition. But CFS is not caused by deconditioning. They need to get their facts straight here.
I was diagnosed as chronic fatique syndrome but it was effectually found out that my problem was due to tumor in pituitary gland. Please check your cortisol hormone from the adrenal gland if you haven't done so.
This is so true. It's one the least glorious illnesses to have, and there's an element of shame for not being able to contribute like you want to. I was in denial for 10 years, and when I couldn't make it through the whole work day anymore, I could no longer deny it. I hope everyone with CFS has as supportive a family as I do; otherwise, I don't know how you can handle it.
I didn't experience the extreme fatigue I have now until after dealing with cancer and chemo. I feel like this is common among cancer survivors. I also think it's tied to my mental health because my brain feels fatigue as well
Same! I feel it’s almost more tiredness of my mind.. by that I mean in the way that I’ve gone through so much that I cannot face any more awful things happening… my brain is like ‘Nope… you are not doing this anymore… ‘
Thank you for this important info. I couldn't put my finger on why I feel this way and it could be debilitating. Going to seek treatment. Again many thanks.
Tricyclic antidepressant made (a low dose 25-50 mgs) made the difference between being 100% couch bound and wasting away to being able to exercise enough to build muscle and live a quiet life.
GET is not a recognised way to treat people with ME nowadays. That's outdated information. Not only is it an old fashioned way of thinking, it's extremely dangerous for their health (as is recommending yoga as a form of "rehabilitation" or exercise). Not only can it be extremely harmful, but it can also make patients' health permanently worse. It's hugely patronising towards the sufferer as well, to insinuate that if they just pushed themselves a bit more that they'd get better. Seriously? Would you tell a patient with a broken leg that they're mistaken, and if they only just push themselves they'll be able to walk on it just fine? Do you honestly believe people will lie in bed in a darkened room just for the hell of it? Give up a career they've had for decades? Also, any CBT associated with ME isn't treated like with any other chronic illness. Patients are told they can think positively to get better, whereas patients with other chronic conditions will be taught how to deal with living with a chronic debilitating condition. See the difference? I can't believe this was posted only months ago tbh. No wonder so many ME patients are still being seriously harmed by doctors who obviously have no clue how to treat people with this often serious condition.
Diagnosed in 2012 😔 fibromyalgia as well. Few years later, domestic abuse caused irreparable damage to my spine and hip so throw in that and degenerating arthritis in spine as well 😭
Thank you for this. I was checking other people’s comments before adding my own regarding this - I totally agree. I was very pleased with this video until the end when he mentioned these 2 notorious “treatments.” I didn’t know NICE had abandoned GET - that is VERY good news!! I was offered this and CBT when first diagnosed back in 2007 but had a gut feeling there was something wrong with it, which was confirmed by my subsequent research, so I declined referral to one of the newly set-up special “clinics” for ME which seemed to be staffed predominantly with psychology experts. It irritates me that ME is the only physiological condition for which the front-line treatments are psychological/psychiatric. However much thinking may have moved on in the right direction over this condition, there is still the underlying implication that it’s “all in your head.” He did not mention pacing, which may not be a “treatment” as such but it is a very useful technique for managing the condition and remaining within one’s energy envelope.
I’m just gonna rant/vent a bit here I’ve had a ton of health issues since birth, including a heart murmur when I was born and pneumonia and the like, and I’ve been struggling to be diagnosed with ANYTHING because there’s so much going on. From potentially cancerous moles (I’ve had like 4 biopsies in the past year) to severe CFS symptoms to heavy ADHD symptoms, there’s so much to sift through. I’m only 17 at the time of writing this, and it is starting to feel like I’m just... defected. I just want to function like the other kids my age, be able to do extracurricular activities without causing my immune system to go on the fritz. I want to be able to do things like travel and experience, but instead I’m confined to my fucking bed because I can’t go a normal school week and not suffer a crash. I’ve been dealing with this since middle school, and it got severely worse after quarantine. And the real kicker- the psychologist I’ve been seeing recently is trying to claim that my CFS symptoms are just my anxiety. My anxiety is not that severe to the point of crashes, headaches, and everything else. He of all people should know this. But yeah, it’s just been a game of checking off what it’s not, sifting through new medicine to see what works, etc etc. I’m tired man. I’m fucking tired.
Find god, I am in the exact same situation, I’ve lost all my friends as I simply have no energy to put into any relationship. I can’t even find the energy to send a text or hangout. All I do is go to school (barely make it through the day) sleep when I get home, watch tv then go to bed, rinse and repeat. Starting to lose hope. I’m hoping something turns around soon cause I don’t know how I am going to live like this
TALK TO A DOCTOR IN INTEGRATIVE MEDICINE. Many major universities have an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona ,etc.) You may have a Delayed reaction to the additives in processed foods. I have a delayed reaction to the Corn Protein (High Fructose Corn Syrup , Corn Starch , etc.) and Dairy Products. It wasn’t the type of problem that Mainstream medicine believes in. People can have a problem with a variety of foods. Processed foods are usually the culprit.
Been dealing with it for years, and I know my triggers, but no idea how to cure it fully. History of complex traumas can bring this on, even when we heal much of it.
Latest research shows that graded exercise therapy and cognitive behavioral therapy are NOT helpful in this disease, and especially GET can cause serious relapses that are either permanent or take an extremely long time to recover from. Pacing is the recommended technique for dealing with CFS, though it is not a therapy as such. You really should update this video. I have to say as someone who has has this illness for nearly 25 years that this video is a bit glib and does not even mention the roughly 25% of patients for whom it is so severe that they can never leave their bed and need full time care. Please do some real research if you are going to try and explain CFS to people. Its a disease that takes your active life away and leaves you in limbo, alive but not alive. It needs to be taken very seriously.
I too had mono...ever since high Epstein bar loads. And bad cfs. ....keep an eye on your Epstein bar. It's linked to serious bad disease.....get panels run when you do blood work. I have been sick w cfs for three years. Now I have an MRI for MS. Which is linked to Epstein bar. Just keep eye on these. I've been trying to get help for three years. Just started to figure out what a monster EBV is. Mold is linked to chronic fatigue. And ebv. Check your house n work spaces. Wishing you good health. Happy Holidays.
@@Vee_of_the_Weald Do you know if there’s any studies on this? I’m trying to find out what’s wrong with me. My doctor put me on a drug to reduce mono antibodies and it doesn’t seem to be helping.
Mine was set off by a real bad Lyme infection. Not one, but over two dozen bullseye rashes after being the sickest I have been in my entire 40 year career of living. Stress and movement are the biggest triggers of symptoms for me. Doctors are useless. They blame my symptoms on lack of exercise, and tell me to exercise more. Even after I tell them that the more I move, the worse I get. It’s a cascading effect. The aggravation of these symptoms while and after movement is why I am at the doctor in the first place.
Is a strange sore throat part of the symptoms? Like I got something stuck in my throat. I have this along with severe fatigue and muscle weakness. It's only been 2 weeks. Please help
I've been suspecting I have CFS for a while. I've chalked it up in the past to just bad sleep problems and depression and trauma lol. A lot of these symptoms are resonating with me and would explain many things happening in my life. i figured i was just lazy.
I never connected the fact that I was diagnosed with scoliosis when I was younger with chronic fatigue. It makes me wonder if we have certain problems that have not been diagnosed both in our bodies and even in our bone structure. If you have misaligned bone structure you could be in chronic pain and stress only exacerbates it.
Post exertional malaise is a delay in symptoms. Eg you had a day where you had several activities that needed doing. The next 2 days you feel fine and then the 3rd day you are wiped out. That is post exertional malaise. Non restorative sleep, you either sleep alot like 18hrs a day which doesn't help recovery or you get very little sleep eg an hr of light sleep every few hours which can last for weeks. Most cfsme patients condition started from a viral infection. These viruses can remain present in a lytic form. Their immune systems will be dysfunctional with low natural killer cell activity as well as cd8 t cell activity. It's not uncommon to see these people have low neutrophil counts/neutropenia. Inflammatory cytokine counts have been found in many studies. The important thing is to remember it's primary issues are immune dysfunction with high levels of inflammation, severe sleep dysfunction with ongoing fatigue not necessarily tiredness. Things like anxiety and depression may not even be present but if they are, they are secondary features, who wouldn't be depressed with little sleep and energy. These mental health issues are no different to other chronic medical conditions that have them as secondary issues like heart disease or diabetes. Cfsme is difficult to treat so it's common for drs to push pts towards more of a mental health issue than an infectious/immune issues. Some pts improve on long term antivirals, so that is a treatment worth looking into. Most treatments seems to be symptomatic for sleep and pain.
@ Dan Smith . Thank you. Pity your post doesn't come earlier in the thread: many will miss it. Is there any way of speaking to you further about this ? Regards from South Africa
Thank you JJ.. You explained that perfectly I was diagnosed 8 years ago I've improved but I have to push myself to do anything. It's hard at times but I want to see my children every day that is my push 😹 they were me out but it's worth it xxx
Same here. There were entire periods of my daughter’s young life where I would parent her from my bed. Funnily enough, she says I have often been answering her needs better than her very active dad.
Please update the diagnosis and treatment of MECFS. The worst is the damaging advice of GET and CBT. CBT might help with management but is not treatment, GET has been disproven and a more customized approach is required, depending on the systems impacted. Look forward to an updated ending to an otherwise helpful video.
I have over 35 years of experience. If you or anyone else would like proper guidance for free, please send me an email. My email address and a brief summary of what I do are in the "About" section of my RUclips profile. Click on the "E" in the circle next to my comment, click on the big "E" again, and then click the "About" tab.
Boy, is this information outdated. CBT anD GET have been debunked. Double check the CDC website for more updated information. And BTW, you gloss over the term, “ malaise”, but the feeling of unwellness is more like having the flu; sore throat, swollen lymph nodes, fever, severe myalgia and “weak as a kitten”.
I was a care giver for my grandma and went through a lot and I helped a friend grandma she was wolking out and I ran to get her and hurt 🤕🤕 my hand 👏👏👏👏 that whin it started 4 years ago I finally got batter please don't try to run after Old people you might get hrut stay safe
i have pots, and along with that FUN 😒 diagnosis i have gastroparesis and developed swallowing issues. CFS is listed as often symptoms/part of pots also. pots also have problems with sleep, lot of symptoms cross over with pots and CFS. plus i have a Bazar immune system reaction which by few allergists i seen might have mcas which (there not clear yet) and all the reaction and body fighting things make you MORE tired. it be a real pain if i have CFS on top of all this(which is possible according to doctors) 😞
I find that loud noise or constant noise such as people talking a lot can trigger my cf over time. Also I can just sit still in a chair and if in my head I think about all I have to do in a day and panic about it, it also triggers my cf. I’ve had cf for about 20 years and I’ve learnt to not overdo the exercise, not to listen to loud noise for long, and to try and eat well. I’ve discovered that when I get a ‘sick in the head feeling’ it’s the sign to slow down. In 2017 I had one of my adrenal glands removed due to a growth that wasn’t cancerous. I was hoping this was the reason I was ill and once the adrenal gland with the mass was removed I’d be better but alas I still have cf. I think it’s something that I just have to live with but now I can manage it better as I have learnt to listen to my body better
I tried so many things. I just feel like my body has been giving me the middle finger for the past 20 years of my life. I can make it less bad, but I never get to be normal. I got mono back then, and was sick 2 years. I was never the same afterwards. I don't know why someone can't just invent a damn pill already, pharma companies make so many others.
Just hearing about this, but I've had these symptoms since I was in 3rd or 4th grade. Falling asleep in school, on bus, in car, after school etc. anxiety, awake at night, digestion issues, trouble staying awake driving, weight gain. On and On and On
All of these symptoms are from the same underlying infection that you were "not" properly tested for. Identifying, treating and fully eradicating the true underlying cause is the permanent solution. Don't you agree?
I became ill with m.e at the age of 6 after a bout of the shingles virus, I never recovered, doctors didn’t listen and blamed my symptoms on attention seeking and a mental illness I then got forced to exercise and went through so so much neglect by ‘medical experts’ It made me so ill that I could of died. I’m now 15 and I’m mostly bedbound, need a wheelchair and need a ng tube. Myalgic encephalomyelitis is a much better term. CFS doesn’t present the severity of the illness, as it is not just fatigue that is just one symptom of this complex condition the people who first made CFS the official name have said they regret it due to those reasons. also the associated conditions include a lot much such as, MCAS, POTS, many autoimmune diseases, and much more then I can’t remember off of the tip of my tongue. the illness being falsely identified as psychogenic has caused decades harm and people continue to strengthen unacceptable stereotypes and misconceptions. It has delayed decades worth of research that could of found something vital. I’ve lost my life to m.e.
Try Wim Hoff method if you haven’t. I don’t know if I have CFS officially but I have experienced symptoms which recently got much worse. I have seen improvement with WHM.
I've had covid in nov 2020 and mono a few months after. A year later things I really started to break down. I'm unable to live life the way i'm supposed to.
Everyday is hard since getting COVID-19 from an unvaccinated child. The stress, long haul Covid.. it effected my heart, blood pressure, my right eye and my kidneys, justed passed another stone. Now I have interstitial cystitis of the bladder. Finally, DX 2018. Was sick most of my life.. I had mono as a child. So glad we can text with peers😁
I contracted Ross River Virus after being supper for a mozzie. Blood tests also said that I had had glandular fever at some point, I have never had it. My immune system was out of wack because of the Ross River. I was diagnosed with CFS along with Fibromyalgia, I am always tired, never sleep well and get pain in weird places for no reason. I have always had IBS and clinical depression (unmedicated) , as have gotten older the lack of sleep is worse and so is the pain. The best advise that I got from the doctor that diagnosed me was to keep as physically active as possible.
RRV is one of the known triggers for ME/CFS. It is also possible for EBV (glandular fever), another known trigger, to exist asymptomatically in its milder forms. Movement is beneficial where tolerated, but exercise as we know it is something to be very careful about especially as the post-exertional mailaise may not kick in for a couple of days.
@@DrakeN-ow1im I never had EVB but that shows up on blood tests for RRV. I had covid a couple of months ago and my ME/CFS is quite bad now. I admit that it is becoming a struggle to keep moving
As most of the comments have noted, GET and CBT are no longer recommended treatments for cfs due to their potential harm. Cfs/me doesn’t really have any officially registered treatments or cures, BUT one of the only things that has repeatedly been proven to help is pacing, which in some places is seen as an actual official treatment :) It would’ve been a very important point, if not the most important, to include in the treatment section due to how it’s one of the most common treatments when it comes to this illness. Pacing is the one thing that all improved cfs patients have in common. Another, maybe a bit more nieche but still known, treatment in the cfs field is LDN. It has little to no side effects, and around 75% of patients see some sort of improvement while in it. There’s even been cases of full recoveries, though we can’t know for sure if it’s the ldn or something else. I’ve been on it since July and I’m finally nearing the recommended dosage, haven’t noticed overall improvement yet but I’m still staying hopeful :)
Some days I feel great, I ride my bike go for a nice long walk, have the energy to do all the things I used to could do. Then the next day it’s like a train hit me mutiple unexplained body aches, indigestion, headache. I just want to lay in bed all day pair that with other conditions and environmental stressors. Something’s bound to happen
This was a good video initially - lots of pretty sensible physiological data, but you let yourself down big-time at the end with your recommendation of CBT and GET as “treatments” - GET now debunked not only as not beneficial, but actively harmful. ME (I refuse to call it “chronic fatigue syndrome” which is an unhelpful label which perpetuated ignorance both in the medical profession and the general public) is the only physiological condition for which a psychological “treatment” (CBT) is recommended as a front-line treatment. This proves that the doctors are still confused and ignorant about it. CBT may be very helpful as an adjunct for managing the natural negative feelings anyone can experience with chronic illness, but not as a front-line treatment for a complex physiological disease. You do not mention pacing. This may not be a “treatment” as such (anyway, there is NO treatment for ME), but it is a very useful skill to help one manage the condition on a day-to-day basis, and can be beneficial not just physically as one learns to live within one’s energy envelope and avoid the dreaded “boom and bust” scenario, but also mentally, because it can give one a boost, and perhaps a sense of achievement that one has managed to do more than expected. That’s my experience, anyway. I think you need to do more research, and then edit and update this video. What you are saying is extremely confusing to a lot of people. Because of this, I feel obliged to hit the “dislike” button - not something I do lightly, or frequently. I consider this to be a serious matter.
"I think you need to do more research, and then edit and update this video. What you are saying is extremely confusing to a lot of people. Because of this, I feel obliged to hit the “dislike” button - not something I do lightly, or frequently. I consider this to be a serious matter." Quite so.
I was diagnosed with cfs after a very bad case of Epstein Barr Virus. That was over 25 years ago. Drs (there were many) found that “good” sleep was the key. A nightly sleeping pill to ensure that I fell asleep and stayed asleep. Relaxation breathing and meditation. I am currently on no other medication and am able to live a normal life.
Wow! That's amazing & wonderful that helped so much with your healing. I guess ppl are different, as having a regular good amount of sleep has never made a difference with my own ME/CFS. This illness is much more complicated than mere sleep deprivation.
@@skylark5789 I wonder how/why. I've been on sleeping meds for over 10yrs & they certainly haven't helped with the CFS symptoms. In fact I'm currently trying to get off them to see if that helps at all. I think they're probably better than if the person is otherwise having almost no sleep at all, but they still do have side effects. Just mentioning so others with CFS won't just shove toxic pills down their throats in the desperate hope that they'll 'fix' things.
^ Also, a lot of ppl are prescribed benzo's to help with sleep, without being told of the dangers of these meds. They are highly addictive & are a nightmare to get off (takes over a yr...my Mum had to have Methadone treatment to help her body survive the detox process). Please ppl do your research.
Chronic fatigue syndrome is not fun. No matter if I want to stay awake sometimes I just cannot stay awake. I just have to lay down and go to sleep. I have to fight rheumatoid arthritis and osteoarthritis not counting my other medical conditions.
My CFIDS/fibromyalgia and sarcoidosis got better since getting the mRNA shots. 3of them so far. I have more energy with less crashes. I’ve had this 30 years. I’m still not near normal but just better.
I did not take the shot, in part because my older sibling had a bad reaction to the Pfizer version. Upon getting covid it really wiped me out and I had long covid. It took about 3 months to clear.
Please update the diagnosis and treatment of MECFS. The worst is the damaging advice of GET and CBT. CBT might help with management but is not treatment, GET has been disproven and a more customized approach is required, depending on the systems impacted. Look forward to an updated ending to an otherwise helpful video.
Fermented vegetables and kombucha and greens daily helps a lot, and lots of tea. But any time I have sugar, processed food, or a cup of coffee I feel symptoms again, and I’m bedbound if I have two. Hydration from quality water is huge for me too
Mine started after 4 years of working 60-70 hours a week, and then having 2 knee surgeries a couple months apart. It lasted about 3 years, and I was mostly in bed. I finally began to feel better, but when I moved to a new house 3 hours away, I had a brief relapse that lasted a few weeks. Recently, I tried alternate day fasting, and after two weeks (6 fasts of 36-40 hours), I seem to be having another relapse. Fasting is a stress on your body.
Appreciate this video very much. I will, however, point out that CBT and GET have been proven to be harmful to those of us with ME/CFS. Thank you for spreading awareness!
Seconding this! This is still a very common misconception in the medical field, and it has led a lot of patients to a pretty bad shape :( I was never officially prescribed GET, but I forced myself to be active before my diagnosis due to a doctor’s advice and it made me completely bedridden & wheelchair dependent really fast. Desperately hoping the knowledge of the danger of those therapies would become more widespread eventually
I don't agree with that trauma causes this because I wasnt abused or had any trauma. When I was 25 I donated blood and my donor card came in, it said they couldnt use my blood because I had Chronic Fatigue and they werent sure whether this disease could be passed through by blood. So then I took this info to my doctor who did tests and agreed that I did have Chronic Fatigue. I also have now 3 other auto immune disorders.
I hate being so tired I want to have energy and sleep doesn’t help. I miss everything before this… it all hurts so bad
Are you recovered
Same, how are you doing now?
@@mxsjshs777 maybe you use too much phone if you feel pain behind your eyes then it might be one of the reason of tiredness
I recovered so you can too.
@@TheDetoxCureGuide how
I'm so debilitated by fatigue. I fight depression just from the stress of not understand why I feel like I'm dying just to do VERY simple tasks. I was so hyperactive almost. Everything he said in this video to help, I am doing except possibly the healthy eating bc most times I am too tired to either shop for food and def too tired to prepare it. I'm always worried. I'm in my 50s but I shouldn't be helpless.
Shop online hun xx I hope you are doing ok ❤
I have a similar issue. 😔
Im sorry know the feeling 😢 I’m only 25 and exactly the same. Waiting around for doctors appointments not knowing why you feel this way. It’s so frustrating 😞
DearDancer. I have chronic fatigue syndrome too , dear. In my case it was years of stress. I was a caregiver to a patient. Just as he was recovering from organ failure, I got sick. Now he takes care of me. I spend hours every day sleeping or resting. I have NEVER DONE THIS BEFORE. I NEVER LET ANYBODY DO ANYTHING FOR ME. MAYBE I SHOULD HAVE. BEST ADVICE IS GET SOMEBODY TO SHOPP FOR YOU ONCE A MONTH. MY LTR HAS CHRONIC FATIGUE TOO. I HE STARVED HIMSELF FOR 3 YEARS BEFORE I MET HIM. HIS ORGANS FAILED. NOW WE ARE TRING TO EAT HEALTHY. LOTS OF VITAMIN SUPPLEMENTS. YOU WILL RECOVER
@@6inthestixI get too much brain fog to shop on line.
I think it’s important to note for people that graded exercise therapy can make many of CFS/ME patients worse, especially if we push ourselves too hard, too soon, which is easy to do. A better recommendation may be strictly aerobic exercise (and perhaps stretching and/or mild weight training keeping heart rate within aerobic range), to tolerance. Tolerance may increase very slowly over time, but do not push it, or the post-exertional malaise will kick in, and be difficult to settle down again. I find following exercise recommendations for POTS to be very helpful. So far, I hve worked my way up to short and gentle walking, though I still struggle with tachycardia and post-exertional malaise from taking a simple shower. I hope that the walks will eventually help me with showers. Easy does it, going slower means getting better faster. Good luck, everyone!
Omg showers are soo difficult! I totally understand that.
I have a plastic stool for when I'm washing my hair in the shower.
My tolerance dipped. Like, I can do "regular" stuff for a day (exams) but then I crash for 4-7 days. It's like I'm running purely on willpower. I also lose vision temporarily and my head always hurts. Can't tell if it's this, my existing conditions, or a neurological condition. Or a combination.
I'm not diagnosed though. How does testing work? Can rhuematologists evaluate me?
True dat, like yin yoga, or hatha yoga, Ti chi, , etc.
Graded exercise was based on fraudulent data and is now contraindicated for CFS. NOBODY who has ME/CFS can benefit from GET. It makes the condition worse.
I used to run up and down a mountain 4-5 days a week. It was my meditation, fun, passion. With ME I haven't even been outside for months at a time.
I hope you all found this lesson helpful and informative! Thank you to this lesson's sponsor, Chegg. Check out the link in the description to receive $5 off your first month of the Chegg Study Pack.
I've had fibromyalgia/chronic fatigue for years. I'm now 65 years old & I seriously don't have the energy to delve into studying reports.......
I have suffered from CFS for years due to extremely stressful circumstances. It's terrible to feel drained all the time and doctors I've seen tell me it's just aging.
I am older also and the last year I have been so tired! My blood work is good. I had a epidemiologist increase my Levothyroxine for sluggish thyroid. But one thing is I am always cold! Like freezing especially in my feet but BP is good. Hope you feel better soon. Life is crazy!
@@bonniedunbar6717 thanks, you too!
That's called gaslighting. Lots of docs tell patients with ME it's just age, just depression etc 🙄. Ticks me right off. It's inexcusable
I can help you.
@@mikecarey1990 No one can help me.
It took me over 3 years to recover from it. But I still need to get enough sleep. Otherwise symtoms come back.For those who are suffering, stay strong and get well soon Friends!
I have it & it sure is hard
What did you do to treat it
🙏
"Lucky Lucky you"
Me too from 8.5.2019 to 20.10.2022.
We are so lucky that we come out of it...
@@mihakavcic7237 how to come out of it please help me
Having been a sufferer since my late 20s (now in my late 50s), in my opinion, this video is spot on. I wish more doctors would watch it.
@@anstriagreenwood3365 I'm sorry things have not improved for you during all this time.
I totally agree with your assessment. I was finally diagnosed in my mid 30's. I am now 76 y/o. The worst thing is that I look fine, but am 100% disabled. Remember, laughter is the best medicine.
@@carrols.hawkins7770 so sorry to hear that.
Same here. I was diagnosed at 25 after having mono. I’m now 53 and it has been rediagnosed as Fibromyalgia in my 30’s and 40’s. Now I am being swept under the menopause bus. I’ve just adjusted to living in chronic pain and fatigue. Every doctor has an excuse as to what causes it. And wow when they find one thing like a bout of low iron, or allergies they blame that too. I just need someone to fix this. Over 25 years of chronic pain and fatigue and brain fog. Life is too short to feel this way.
@@Kim-ri1hg Are you still having those problems?
Chronic fatigue syndrome isn't fun at all and it's not a joke. We're not lazy people. It's our bodies just don't want go. I already have had rheumatoid arthritis for almost 19 years now and osteoarthritis and other medical conditions. Hereditary disorders believe me I know all about that. I feel like a medical experiment in a cage because I have so many medical conditions and disabilities and limitations already. I don't even want to be diagnosed with anymore. It's stressful enough with everything I have and being in excruciating pain and suffering from the minute I wake up till the minute I go bed. Then I roll over and the pain in my spine and hips wake me up. I'm overwhelmed with everything and sometimes I get tired of fighting to just stay alive. Straight truth.
Hi Kimberly, I'm sorry about your health issues! Your probably sick of listening to doctors but I'd like to tell you about Dr Berg, he's on RUclips and he's made some short videos about chronic fatigue that helped me, hoping the same for you! Love from Australia!🌼🦘🌼🦘🌼🦘🌼🦘🌼🦘🌼
I'm slowly loosing my ability to walk completely. I have accepted that I can no longer walk anymore. I walked as long as I could. God knows also that I can't keep trying to walk. I've had 46 falls already. Everyone expects me to keep doing everything like I use to be able to years ago and I can't do everything anymore. I'm waiting patiently for my motorized wheelchair that their building me. I laid this heavy burden at the feet of Jesus Christ. I'm stuck in bed in excruciating pain today and my hips, spine and knees don't want to hold me up today so I'm in bed trying my hardest to rest and not think about the excruciating pain in my bones.
@@kimberlydavis5034 I pray that the Lord Jesus Christ would heal u. Believe and trust that he died for ur sins was buried and he rose again the third day. his blood washes away all ur sins. He’s coming soon and u will get a new incorruptible immortal body
@@kimberlydavis5034 try cutting out gluten
@@kimberlydavis5034 try cutting out gluten
Most (or all) the people I know who have suffered from CFS also have fibromyalgia and have a history of prolonged trauma and stress. THAT is the underlying factor and the link. Adrenal fatigue is also related. See Dr Berg on naturally supporting the adrenals. That's what has helped me. Eat healthy, adequate rest, build joy, destress as much as possible,.and support/nourish the adrenals ....prayer is also very helpful.
It is unwise to generalise so greatly. “THAT” may be the the underlying factor and link that you can see in the group that you know. However, that is not relevant to ALL sufferers of CFS. HPA axis malfunction, together with immune system problems, serotonin imbalance, and viral infection (plus others mentioned in the video) play a hugely relevant part too.
Prayer could be grouped into anything that brings positivity and joy to someone as a useful tool - such as walking in nature, building joy as you say etc etc or a placebo effect.
Long Covid is a newly discovered condition creating many CFS type symptoms and it may be that CFS is broadly related to a viral syndrome from some point in a patient’s history.
@@kcam3683 it's true across the board of dozens of trauma survivors I know. And I watched the video ....it verifies what I've seen AND witnessed.
@@kitdriscoll1288 I appreciate that’s what you’ve experienced in dozens of cases, but in millions of cases that there will be - trauma and stress will not be the determining factors. That is a statistical impossibility. It is what you have experienced, not what all have experienced. That’s why the contributing factors are more varied and very specific - as detailed in this video and as specified by experts.
@@kcam3683 just go with what you know. It's okay.
If you have constant panic attacks does that cause adrenal fatigue?
Amazing how it was regarded as being something we just imagined and we should pull ourselves together. I was diagnosed 15 years ago but it took a long time to get there. Thank you for explaining ME/Fibromyalgia. Perhaps now we will be taken seriously when we are not well.
Doubtful.nice thought though.☝️there's lots of money to be made for them 1st.😉how long has cancer been around?😎🙏💪💖✌️
Graded Exercise Therapy is extremely outdated (yet still mentioned here). I'm sorry, but don't expect to be treated any better with ME than in the past. The medical profession still lives there, unfortunately lol
When you hear cbt/get as a part of a treatment plan for cfsme, turn away as fast as you can.
The largest study on cbt/get by the UK on cfsme, was eventually after hard legal work to get the documentation of the study, shown to have results falsified and actually harmful to patients.
If cbt/get was so good for immune disorders, why isn't it the main treatment for HIV? Because they don't want to take patients seriously even though there is plenty of physiological research to back cfsme up.
@@lindatannock yeah while I was in the best shape of my life and a personal trainer I literally had a doctor look me in the eye and tell me to fix my issues I just need to excercise and eat healthy.
I was stunned.
I'm done...my condition has grown so severe my body basically has no muscle left, and it's just been so hard. I've been secretly crying in my room everytime I see my body in the mirror, when I get palpitated and dizzy just by standing and my legs wobble.
I don't have any hope of recovery anymore, I have lost everything because of this disease. My clothes just are too big now, and I have so much loose skin I am thinking of wrapping something around myself when I go out. I am so tired and honestly depressed because no matter what I try, no matter how positive I stay, it keeps.getting.worse. I...I have not said this to anyone except the strangers on the internet (I mean you lovely people). I have been praying for a car to hit me, or a poison in my food or pills. I am constantly wishing for death because I can't live like this. I am holding on one last strand that maybe some doctor can pull a miracle and help me, and I am giving it 4 months. After that...I rather be at peace and ask god to forgive me, than to suffer and be a burden to my family.
Has anyone here, actually recovered?
This video seriously needs an update... Please anyone wanting to know the latest information available, please do your research, read the comments below and ask questions of your doctors and specialists... Treatment should be tailored to your needs... GET may not help and may even harm you... This breaks that often quoted rule = FIRST DO NO HARM.
Please make sure the people you ask to help you are up to date with treatments etc. Blessings, Dot
What is interesting in all of these videos is the total lack of recognition of the role of detrimental drug side effects (ie. GI tract and microbiome damage) or nutritional deficiencies that result from a diet of ultra-processed, high sugar, high omega-6 diet, along with dairy and gluten, common issues related to this and many topics like gastric disorders.
OK, you have a point, but once you have repaired the damage (In my case, SIBO, SIFO (candida), Leaky gut leading to intolerance of dairy and grain.) After repairing all that, I still have fatigue. So I agree that things are worse due to the impacts of gut health, but even long after, the problems can still persist
This may be true for some sufferers, but then it is also true for some non-sufferers. It is not a precursor or a cause of ME/CFS. I think you need to be careful when you make generalisations. People with this condition are desperate to feel better, and it's unfair to offer a solution, which at best will only be useful to a few of them
@@margaretcorfield9891a few is better than none
I was diagnosed at the age of 24, I've had this since September 2019 and it still runs my life- thankfully not as bad as it used to be but I've had to limit how much I do massively. Before CFS I had two jobs, one full time and one part time, have my horse to care for and would also help friends with their horses. Have since had to accept that I only have one job (which I struggle with at times) and still care for my horse with help.. luckily I have been able to speak with a specialist but my last appointment with them is next month..
This is an illness I wouldn't wish on my enemy
How were you diagnosed? Blood test or just based off your symptoms
@@mulanimulani3483 mixture of both, lots of different tests and blood tests to rule everything else out and once they'd ran out of everything else it could have been I was diagnosed and referred to a specialist
Thank you for your response. What type of specialist do you see? They’ve ruled out all the auto immune deficiencies for me . My doctors believe I’m just lazy but in reality I’ve always ran low on energy since a child.
@@mulanimulani3483 it was a specialist for chronic fatigue, my doctor's referred me to them
I hope each new day brings you closer to a full and speedy recovery ❤️
My teen son developed CFS and POTs and depression after having Covid last May. We found an amazing immunologist who is the one that confirmed the diseases and I am seeking out ways to help support my son. Thank you for the information.
Please research about DNRS ( dinamic neural retraining system) it has helped so many.
Have you tried this yourself? If yes did it work? It sounds v interesting
Do not let him do GET!! It could set him back permanently.
I’m 32 and have chronic fatigue. I saw an excellent alternative medicine practitioner that treated my adrenal fatigue and gut. Also had me eat clean. I let myself relapse with too much stress and too little sleep and poor diet. Now I’m trying to get back better again. Unfortunately I think once you have it you have to maintain for the rest of your life. But seriously get your son to an alternative doc. Western medicine can not help with Chronic fatigue. Drugs are not the solution.
@@MrGuitarfreak132 what some solutions?
I was diagnosed with Fibro/CFS in 2005, then found Dr. Jacob Teitlebaum, read his books then made an appt. at one of his clinics. I was pleased with the extensive testing that was done there and the answers I desperately needed to understand why I felt this way. This is a great video Thanks For Sharing!
Did you find out what was wrong with you other than CFS?
I accidentally found out about Hidden Food Allergies (Intolerances). I had a delayed reaction to the Corn Protein (High Fructose Corn Syrup , Corn Starch , etc.) and Dairy. People can have this problem with any food that they eat daily (like Soy additives in processed foods). Talk to a doctor in Integrative Medicine. Many major universities (Johns Hopkins , Duke University , University of Arizona , etc.) have an Integrative Medicine Department.
I've had this since I was a child, I have always been exhausted and needed more sleep than most. I was also diagnosed with Extreme Anxiety and Panic disorder as I got in my teen years. I am in my 50's now and the anxiety has morphed into being apart of who I am but it's not the same as it was when I was younger. My anxiety now consists with depression and isolation which is the total opposite of my teen years when I was horribly scared of being alone. Now I love being alone, I have always been weirdly sensitive and feel others emotions which causes anxiety and depression. Almost makes me LOL saying it all out. Ain't life grand!?!? LOL!!! Seriously though, I grew up in the 80's and mental health was a hush hush thing, my sleepiness made me miss a lot of school. I would be up all night with anxiety and then exhausted the next day. Horrible way to live, glad I outgrew that. Yoga and mind talk help me so much.
Who told you the story of my life? I swear I could have written this post myself. It can feel nearly impossible but do try to stay in touch with the world, friend. The isolation is so very tempting (I know; I am actively trying to pull myself out of a spell 🙂) Life was meant to be shared. I hope that today you can find your way to the sunshine for a bit of peace and a smile.
@@JsPrittyKitty That was the sweetest reply, thank you! It's a daily battle to stay in society. I can't even watch the news any longer, it is just too much! You take care as well! Prayers you continue to win in your battle!!! Much love!
I can remember being so exhausted that I couldn’t lift my head off my desk. Early grade school . I also have SAD and depression among other things that go along with fibromyalgia.
I’m reading this with tears. I’m also in my 50s and this illness and depression has ruined a lot of my life. I’m no longer able to work although I hope to do some volunteering soon.I, too also feel others emotions and I’m annoyingly super sensitive. I feel embarrassed at times as like you I grew up in the 80s and it wasn’t a condition you shared with anyone. In fact, I felt a lot of shame and still do at times. I wish you well.
Look into being an Empath, that will explain a lot
Please update this video! The National Institute for Health and Care , NICE, (British) have published new guidelines for ME treatment. GET (graded exercise therapy) and CBT are NO LONGER RECOMMENDED!
I've read in many many studies that Cognitive therapy and graded exercise therapy are no longer recommend for ME/CFS. Can you make an updated video please?
Agreed. Its very outdated!!
People who recover from (or at least get better) it do exercise bro. I believe further research needs to be done. No one can give exact treatment plan yet.
Been sick pretty much all year, fibro runs in the family was diagnosed with it 2 years ago. Sleep 12-15 hours a day and am still tired, tried other ways of sleep as well. Lymph nodes always swollen, stomach always in pain and i work. I go to therapy, i take the meds, i do as told. Nothings changed. Starting to think it wont change been so tired for nearly 7 years now, nothing i try works.
what meds do u take?
@@thatkidflossy2792 vistaril, hydroxyzine, albuterol, and now chantix daily. Been using tylonal to rid myself of some of this sickness
@@Nealiousgayus what kinds of meds are these? anti depressants or something to do with your immune system.
@@thatkidflossy2792 anti anxiety, anti depressant, inhaler, and stop smoking agent
@@Nealiousgayus I don't know where you live, but there is a Dr in Las Cruces NM who has helped a lot of people using vitamins and minerals. (See Arthur Berkson) Somehow chemicals do not seem to help CFS. He does a lot of testing to determine viral loads etc. As long as you are on an antidepressant you will never feel better. It is a Dr go to when they dont know what to do....
Also new studies say that it is no longer considered a psychological condition or disorder. It is actually physical.
oh its physical...I have it and it's awful, I used to be a marketing manager, was a party girl and loving life...in 2013 I got very poorly and unfortunately mis diagnosed with a viral infection over several visits to the doctors over 6 weeks..I eventually got rushed to hospital and there I was diagnosed with meningitis, and then 2 days later I was diagnosed with glandular fever and my liver packed in..let's just say I was very ill.. ok so 6 months after recovery, I had to go back to the doctors due to feeling the same tiredness that I had experienced when my liver was down...the doctor said it may be linked to the glandular fever that went undiagnosed therefore left untreated..after another 4 years of absolute misery, I was diagnosed with M .E (chronic fatigue) I've now had it nearly 10 years and its destroyed practically everything I was before and probably what would or could have been my future. lovely to see that people are interested and giving input it really does help. The more people who know about the condition the better to help understand how to help a loved one or friend with it. Thanks for the upload 😊
@@lipsyloo I feel like I lost my life as well. I unfortunately had a baby, a toddler, and teenagers too. Unfortunately they had to suffer along with me in a sense. Prayers for recovery.
@@kaykayyyyymwaa I'm sorry to hear that, I only had the one son who was about 7 at the time so I dread to think how hard it has been for you and the kiddies! Thank you and I hope you get more good days than bad and also sending prayers your way 😊😊 thanks for your reply Xxxx
I believe my symptom onset was after being hospitalized with untreated Strep pneumococcal pneumonia that resulted in becoming septic. I was told that my organs were shutting down. This occurred during a very stressful time in my life with a new baby, a toddler, two teenagers. I was attending school full time legal studies with a 4.0 and this happened right before my last semester. Plus a long time partner (father of my two youngest children) who relapsed back into his addiction. I was attempting to obtain custody of my (step) son, his son after his mother and he both lost custody of him in a neighboring state. Needless to say not having help or seeing him until he was back in recovery. Bought a new house too big to take care of alone with a yard too big to care for working anywhere from 40-70 hours to afford my house. Needless to say it was years of constant stress from multiple directions at all times for YEARS! I have not been the same since. I feel like I'm literally dying sometimes, or just waiting to die at other times when I am unable to socialize, can barely make any appointments, plans, or obligations without trying to reschedule or cancel as I never know how bad I'll feel from day to day. I'm praying to God that he will let me recover to at least raise my youngest children and know my grandchildren. Prayers that we can all recover. Amen.
Praying for you ❤️
@@SteenyBean thank you!
I hope things have improved with your health and family in Jesus name
Estou orando por todos nós
This is great info.
My doc believes I may have this but hasn’t given me the diagnosis. I have been in great health until my last military deployment to the desert. From that point on, it’s gone down hill with a myriad of issues. Recently fatigue has been overwhelming. I am a person who retired up to 21 years the military worked out around two hours a day. Now I struggle to complete a 30 minute workout. I am wiped out by doing simple task, such as shopping, laundry, or a few flights of stairs. I work 12 hour days, and when I get off work, I am absolutely done. The second I stop moving I am done for the day because I’ll fall asleep or struggle to get up and moving. The only way to describe it is I absolutely exhaustion, mixed with depression.
I was diagnosed at 14 with CFS by my therapist. But I’ve never seen a sleep specialist. There’s like over 100 sleep disorders right?? I’m getting on my husband’s insurance, and getting a referral to a specialist. I also have a panic disorder, pcos and add. Been desperate for peace for as long as I can remember.
I was diagnosed with CFS a year and didn't think much of it. I have a compromised immune system and have had so since my teens. I got COVID and that was that! I also realised my mum has CFS but probably undisgnosed as she has an enlarged heart, adult asthma. This video was great education and an eye opener! I've also suffered Bell's Palsy 3 times in my life, have sinus disease, and a B12 deficiency. I didn't ask for this, but here I am. I use to ride my bike 20 kms a day. Now I can barely wash dishes.
So how do you manage to actually get a doctor to diagnose and treat this? Have had these symptoms for years and tell me doctors everytime I talk to them and they just run some regular blood tests and tell me I’m fine
Ger a referral to a rheumatologist. Get them to do all the tests etc. Once everything else is eliminated from your blood tests they may diagnose you with it.
My doc gaslit me for years before I managed to get a referral. Insist on it! Good luck.
Am a med student, am almost dropping out of medical school because of chronic fatigue, dome advice
I don’t have cronic fatige syndrome, but now I know that the pain and fatige I fail isn't normal, I am not just "stressed or lazy"
So really really thank you .
I’m tired all the time and I’m not even 30 yet. I’ve been diagnosed with anxiety and depression since I was 19 I’m 25 sometimes my body hurts all the time.
Felt that, and nobody really understands
Get well soon
PLEASE Do more research before your videos because cognitive behavioral therapy and exercise therapy are no longer acceptable treatments for ME/CFS. Yes CBT might help with anybody dealing with any type of anxiety from having a chronic illness. But it is not a treatment for this condition. Mainly they thought that it was in people's heads and not a physical disorder so they thought that CBT and graded exercise therapy would be something that would help. Graded exercise therapy is extremely harmful for people with CFS and makes people much worse. It is good to move when you can when you feel as though you have enough energy but you need to Pace yourself. Pacing is a good skill depending on your level of severity.
If you want good information about CFS please look into the open medicine foundation
Very well said. Couldn’t agree more. I was very pleased with this video as I heard him describing all the physiological aspects, until the end when he trotted out the tired old mantra of CBT and GET. He mentioned nothing about pacing, which may not be a “treatment” as such (there is no treatment for ME anyway), but it is a very useful management technique on a day to day basis, to help stay within your energy envelope.
Exactly and it’s disappointing that this video mentions CBT and graded exercise. It prevents it being a resource for sharing because it serves to reinforce incorrect perceptions and information, which can be much of the battle when dealing with this condition. One of the reasons those two treatments were axed from official advice was because ME sufferers were getting markedly worse, some even made bedridden. Then there’s the shaming and belittling practised by many alleged medical professionals. Continuous Professional Development doesn’t seem to be as thorough as it could be in medicine. The World Health Organisation defines it as a ‘Neurological Disease’ and that feels correct to me - almost all the symptoms I suffer from are neurology linked.
@@christinedunn5709 Couldn’t have said it better myself. This sort of video does nothing to improve general public and professional attitudes to what has been proved to be a neurological disease. So disappointing, because the video started out so well and seemed to clarify that this is a physiological condition and not a psychological one.
I don't think this is my problem. But there's definitely something wrong with me. I've always had insomnia. Depression and anxiety. But lately I've been so exhausted for no reason. I used to be able to get through work but need a nap after. Lately I've barely been able to make it through the day. I've had to sit in my car and take a nap at lunch just to get through the rest of the day. It's effecting my work, my family, and it's getting so my wife is starting to worry. I'm barely awake right now. It's hard to type.
Update?
Sounds like CFS. Update?
I have CFS, it's genetic, my grandfather had it, my father had it, and I've had it at several points in my life both as a child and as a young adult then in my late 30s it hit like a mac truck. Doctors refused to diagnose it, despite now going on ten years of reduced function and decline. No one seems to understand the exertional exhaustion or the malaise. And honestly 1 day delayed recovery is "optimistic". If you exert then exert while in the exhaust phase and exert again you start to go down a functional spiral that climbing back out of can take days, even a week to return to previous levels of function and if those rest periods are interrupted by exertion.. then the clock resets. I have what is called disrupted sleep, it's clinically mapped in sleeping studies but no doctor was interested in looking further because there was no C-pap money to be made. I go through a full wake-sleep-wake cycle every 15-20 minutes a pattern that repeats all night. I do not feel rested by sleep.
Still 99% of doctors don't want to diagnose it. Don't want to study it. And call it all in my head. I live with chronic ghost pain. I've had cognitive studies show declined working memory set. The loss of concentration.
I do my best to regulate my life. I am least given full disability status but no one wants to say the word, cast the diagnostic. I have learned, over ten years, to manage it. But life calls on men to do lots of things, especially fathers. The results can be difficult to handle when people don't understand that I won't get better. No I am exhausted beyond all recognition. That when I get tired i lose proproception. It's awful. Not to mention the pain. The confusion. Lack of focus. Inability to "order sort" or "priority sort" tasks or duties.
Nothing like going to open a door and it feels like it weighs a million tons.
So very sorry hold on maybe help soon
I'm sorry you've been going through this. I have very similar symptoms...
It’s taken more than 2 years to feel like I can go back to living life again but I have a really bad immune system and every time I do something slightly more than my normal routine I crash again. As a 23 year old it’s so hard like I can’t do the exercise I used to do, I can’t go out as often and no one around me truly understands it when I try to talk about it - it’s a lot of ups and downs and experimenting day to day what I can do but I’m trying to fight on and continue as much as possible
I understand
Look into Hidden Food Allergies (Intolerances). You may be sensitive to certain common ingredients in processed foods. It may trigger a delayed reaction. Talk to a Doctor in Integrative Medicine. Many major universities have an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona , etc.)
i fell asleep watching this LOL
Mine started at 24, my brother's at around 18 and my step-sister at 8. It's devastating.
Mine also at 24 bro, how are you doing now???
This is so depressing. I was training for the taekwondo Olympics but I got IBS (potentially IBD) but now I feel like I have CFS. I just cannot even stand now or do basic day to day tasks.
Moreover, I feel like I don't have my previous level of intelligence or brain functions. I find it so hard to concentrate in classsss
How are u now?
I have had ME most of my adult life, since my early 20s. Was not diagnosed until I was 50. I am now 71 and still there is no successful treatment. Unfortunately that is just the reality.
MorkieMom says she ate steak and recovered from cfs in 6 months. I'm like you, White Bird. I'd eat steak 2x daily if it would help. Why would I give up being a full-time real estate broker of 20 yrs., loss of income, $$ to doctors, vitamins, snake oil, can't attend a wedding w/o leaving early, same with church, & been there/still there? BUT everyone says I look
grand. I appear well and wear a lovely smile. Perhaps my next career should be an actress. HA..
@@bernadettegreen7134 yeah, let's all eat steak lol. I'm thinking it possibly wasn't ME, huh?
I gave up a 40 year career. Was exercising 10 hrs a week, and I'm an ex pro athlete.
Docs still try to push the "deconditioning" nonsense 🙄
Vitamin deficiencies play a part, as a coeliac i found taking 10mcg folate,vit B12, multi b combination,vit c and iron helped me, I also took vit d and calcium. It helped perhaps 20per cent, helped slightly with brain fog,which was so bad I could only speak in one word replies. Swayed when I tried to walk a few metres. Find an integrated gp, a bit pricey. I also have aggressive RA, fibromyalgia, chronic fatigue and heart failure. Disabled at age 42, with no answers. Best wishes all. 🐨
They recommend Graded Exercise Therapy??!!! The PACE trial done in the UK that allegedly indicated that GET and CBT were beneficial in CFS. It was found at the data had been manipulated. Unfortunately, the CBT that they used, was primarily trying to convince the patient that there was nothing wrong with them, rather than being a supportive environment that helped one adjust to their limitations. GET may help chronic fatigue, but not chronic fatigue syndrome. There is a difference. Chronic fatigue can be caused by lack of exercise causing deconditioning. So of course gradual exercise would help improve that condition. But CFS is not caused by deconditioning.
They need to get their facts straight here.
I was diagnosed as chronic fatique syndrome but it was effectually found out that my problem was due to tumor in pituitary gland. Please check your cortisol hormone from the adrenal gland if you haven't done so.
Nobody wants to believe you're sick with it.
This is so true. It's one the least glorious illnesses to have, and there's an element of shame for not being able to contribute like you want to. I was in denial for 10 years, and when I couldn't make it through the whole work day anymore, I could no longer deny it. I hope everyone with CFS has as supportive a family as I do; otherwise, I don't know how you can handle it.
I am fortunately(?) 83 and have had ME/CFS since I was 45 which adds up to 40 years in 2025 . These years have been hell !
I didn't experience the extreme fatigue I have now until after dealing with cancer and chemo. I feel like this is common among cancer survivors. I also think it's tied to my mental health because my brain feels fatigue as well
Same! I feel it’s almost more tiredness of my mind.. by that I mean in the way that I’ve gone through so much that I cannot face any more awful things happening… my brain is like ‘Nope… you are not doing this anymore… ‘
May God bless you both Samantha and Melly. Wishing you both comfort, peace and strenght. Love.
Thank you for this important info.
I couldn't put my finger on why I feel this way and it could be debilitating. Going to seek treatment. Again many thanks.
Tricyclic antidepressant made (a low dose 25-50 mgs) made the difference between being 100% couch bound and wasting away to being able to exercise enough to build muscle and live a quiet life.
GET is not a recognised way to treat people with ME nowadays. That's outdated information.
Not only is it an old fashioned way of thinking, it's extremely dangerous for their health (as is recommending yoga as a form of "rehabilitation" or exercise). Not only can it be extremely harmful, but it can also make patients' health permanently worse. It's hugely patronising towards the sufferer as well, to insinuate that if they just pushed themselves a bit more that they'd get better. Seriously?
Would you tell a patient with a broken leg that they're mistaken, and if they only just push themselves they'll be able to walk on it just fine?
Do you honestly believe people will lie in bed in a darkened room just for the hell of it? Give up a career they've had for decades?
Also, any CBT associated with ME isn't treated like with any other chronic illness. Patients are told they can think positively to get better, whereas patients with other chronic conditions will be taught how to deal with living with a chronic debilitating condition. See the difference?
I can't believe this was posted only months ago tbh. No wonder so many ME patients are still being seriously harmed by doctors who obviously have no clue how to treat people with this often serious condition.
Diagnosed in 2012 😔 fibromyalgia as well. Few years later, domestic abuse caused irreparable damage to my spine and hip so throw in that and degenerating arthritis in spine as well 😭
Hope you heal and get better 💕
CBT and GET are not treatments for CFS. CBT is no use and GET makes it worse. UK's new NICE guidelines for CFS/ME has abandoned GET.
Yes NICE has recognised GET particularly and CBT do not help. This has now been medically agreed
Thank you for this info as I was confused
Thank you for this. I was checking other people’s comments before adding my own regarding this - I totally agree. I was very pleased with this video until the end when he mentioned these 2 notorious “treatments.” I didn’t know NICE had abandoned GET - that is VERY good news!! I was offered this and CBT when first diagnosed back in 2007 but had a gut feeling there was something wrong with it, which was confirmed by my subsequent research, so I declined referral to one of the newly set-up special “clinics” for ME which seemed to be staffed predominantly with psychology experts. It irritates me that ME is the only physiological condition for which the front-line treatments are psychological/psychiatric. However much thinking may have moved on in the right direction over this condition, there is still the underlying implication that it’s “all in your head.” He did not mention pacing, which may not be a “treatment” as such but it is a very useful technique for managing the condition and remaining within one’s energy envelope.
I had fibromyalgia since I was 17, depression since 5, and severe mental health.
Depression since 5? I never heard of anyone getting it so young.
I am so sick. This illness is too much for me to tolerate.
Get an alcat food allergies test, and avoid the foods causing you specifically problems
Keep the Faith my friend and stay strong 💪
I'm with you my friend. Stay strong!
Hang in there
God’s got you 💪🙏
I have fibromyalgia and chronic fatigue real tiredness all the time
I’m just gonna rant/vent a bit here
I’ve had a ton of health issues since birth, including a heart murmur when I was born and pneumonia and the like, and I’ve been struggling to be diagnosed with ANYTHING because there’s so much going on. From potentially cancerous moles (I’ve had like 4 biopsies in the past year) to severe CFS symptoms to heavy ADHD symptoms, there’s so much to sift through. I’m only 17 at the time of writing this, and it is starting to feel like I’m just... defected. I just want to function like the other kids my age, be able to do extracurricular activities without causing my immune system to go on the fritz. I want to be able to do things like travel and experience, but instead I’m confined to my fucking bed because I can’t go a normal school week and not suffer a crash. I’ve been dealing with this since middle school, and it got severely worse after quarantine. And the real kicker- the psychologist I’ve been seeing recently is trying to claim that my CFS symptoms are just my anxiety. My anxiety is not that severe to the point of crashes, headaches, and everything else. He of all people should know this. But yeah, it’s just been a game of checking off what it’s not, sifting through new medicine to see what works, etc etc. I’m tired man. I’m fucking tired.
♥️ hang in there…
@@mellyo7262 thank you
Yeah you know yourself it's not anxiety. Hang in there.
Find god, I am in the exact same situation, I’ve lost all my friends as I simply have no energy to put into any relationship. I can’t even find the energy to send a text or hangout. All I do is go to school (barely make it through the day) sleep when I get home, watch tv then go to bed, rinse and repeat. Starting to lose hope. I’m hoping something turns around soon cause I don’t know how I am going to live like this
TALK TO A DOCTOR IN INTEGRATIVE MEDICINE. Many major universities have an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona ,etc.) You may have a Delayed reaction to the additives in processed foods. I have a delayed reaction to the Corn Protein (High Fructose Corn Syrup , Corn Starch , etc.) and Dairy Products. It wasn’t the type of problem that Mainstream medicine believes in. People can have a problem with a variety of foods. Processed foods are usually the culprit.
Glad it's an actual diagnosis (wish people took Fibromyalgia more seriously) .
Adrenal fatigue is interesting. It has been hard, at least for me, to get any real info on Adrenal Fatique, even from my endocrinologist.
Been dealing with it for years, and I know my triggers, but no idea how to cure it fully. History of complex traumas can bring this on, even when we heal much of it.
@smellymiasma Just be quiet unless you learn what it's really about LOL otherwise, this is called stupidity, kid.
@smellymiasma Go and troll elsewhere. It wouldn’t be a medical condition if it were as simple as ‘taking a walk.’ 🙄🤦🏻♀️
@smellymiasma how suitable a nickname you have chosen.
Latest research shows that graded exercise therapy and cognitive behavioral therapy are NOT helpful in this disease, and especially GET can cause serious relapses that are either permanent or take an extremely long time to recover from. Pacing is the recommended technique for dealing with CFS, though it is not a therapy as such. You really should update this video. I have to say as someone who has has this illness for nearly 25 years that this video is a bit glib and does not even mention the roughly 25% of patients for whom it is so severe that they can never leave their bed and need full time care. Please do some real research if you are going to try and explain CFS to people. Its a disease that takes your active life away and leaves you in limbo, alive but not alive. It needs to be taken very seriously.
CBT is helpful for every sickness. Don't be ridiculous. It's also not a disease, it's a syndrome, very different.
I've heard this often goes with anciety/ depression. I've had that and I think having mono made them all worse.
I too had mono...ever since high Epstein bar loads. And bad cfs. ....keep an eye on your Epstein bar. It's linked to serious bad disease.....get panels run when you do blood work. I have been sick w cfs for three years. Now I have an MRI for MS. Which is linked to Epstein bar. Just keep eye on these. I've been trying to get help for three years. Just started to figure out what a monster EBV is. Mold is linked to chronic fatigue. And ebv. Check your house n work spaces. Wishing you good health. Happy Holidays.
Mono definitely makes it all worse
@@Vee_of_the_Weald Do you know if there’s any studies on this? I’m trying to find out what’s wrong with me. My doctor put me on a drug to reduce mono antibodies and it doesn’t seem to be helping.
@@Vilatus Epstein Barr virus is caused by mono EBV causes chronic fatigue syndrome
The anxiety/depression is often CAUSED by the ME.
I have it along with systemic lupus. Life's a blast
Mine was set off by a real bad Lyme infection. Not one, but over two dozen bullseye rashes after being the sickest I have been in my entire 40 year career of living.
Stress and movement are the biggest triggers of symptoms for me.
Doctors are useless. They blame my symptoms on lack of exercise, and tell me to exercise more.
Even after I tell them that the more I move, the worse I get. It’s a cascading effect.
The aggravation of these symptoms while and after movement is why I am at the doctor in the first place.
Is a strange sore throat part of the symptoms? Like I got something stuck in my throat. I have this along with severe fatigue and muscle weakness. It's only been 2 weeks. Please help
I've been suspecting I have CFS for a while. I've chalked it up in the past to just bad sleep problems and depression and trauma lol. A lot of these symptoms are resonating with me and would explain many things happening in my life. i figured i was just lazy.
I never connected the fact that I was diagnosed with scoliosis when I was younger with chronic fatigue. It makes me wonder if we have certain problems that have not been diagnosed both in our bodies and even in our bone structure. If you have misaligned bone structure you could be in chronic pain and stress only exacerbates it.
Please try L Arginine am having my dad take it so far so good plus high dose vit d
Post exertional malaise is a delay in symptoms. Eg you had a day where you had several activities that needed doing. The next 2 days you feel fine and then the 3rd day you are wiped out. That is post exertional malaise.
Non restorative sleep, you either sleep alot like 18hrs a day which doesn't help recovery or you get very little sleep eg an hr of light sleep every few hours which can last for weeks.
Most cfsme patients condition started from a viral infection. These viruses can remain present in a lytic form. Their immune systems will be dysfunctional with low natural killer cell activity as well as cd8 t cell activity. It's not uncommon to see these people have low neutrophil counts/neutropenia. Inflammatory cytokine counts have been found in many studies.
The important thing is to remember it's primary issues are immune dysfunction with high levels of inflammation, severe sleep dysfunction with ongoing fatigue not necessarily tiredness.
Things like anxiety and depression may not even be present but if they are, they are secondary features, who wouldn't be depressed with little sleep and energy. These mental health issues are no different to other chronic medical conditions that have them as secondary issues like heart disease or diabetes. Cfsme is difficult to treat so it's common for drs to push pts towards more of a mental health issue than an infectious/immune issues.
Some pts improve on long term antivirals, so that is a treatment worth looking into. Most treatments seems to be symptomatic for sleep and pain.
@ Dan Smith . Thank you. Pity your post doesn't come earlier in the thread: many will miss it. Is there any way of speaking to you further about this ? Regards from South Africa
Thank you JJ.. You explained that perfectly I was diagnosed 8 years ago I've improved but I have to push myself to do anything. It's hard at times but I want to see my children every day that is my push 😹 they were me out but it's worth it xxx
Same here. There were entire periods of my daughter’s young life where I would parent her from my bed. Funnily enough, she says I have often been answering her needs better than her very active dad.
If i may ask, what medications were you prescribed? And what exactly made you improve? I'm having a lot of troubles with this disease, sadly
Please update the diagnosis and treatment of MECFS.
The worst is the damaging advice of GET and CBT.
CBT might help with management but is not treatment, GET has been disproven and a more customized approach is required, depending on the systems impacted.
Look forward to an updated ending to an otherwise helpful video.
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This video is very accurate. Thank you
Boy, is this information outdated. CBT anD GET have been debunked. Double check the CDC website for more updated information. And BTW, you gloss over the term, “ malaise”, but the feeling of unwellness is more like having the flu; sore throat, swollen lymph nodes, fever, severe myalgia and “weak as a kitten”.
Indeed.
This video is quite unhelpful in so many ways and quite wide of the mark in others.
CBT has not been "debunked".
I was a care giver for my grandma and went through a lot and I helped a friend grandma she was wolking out and I ran to get her and hurt 🤕🤕 my hand 👏👏👏👏 that whin it started 4 years ago I finally got batter please don't try to run after Old people you might get hrut stay safe
i have pots, and along with that FUN 😒 diagnosis i have gastroparesis and developed swallowing issues. CFS is listed as often symptoms/part of pots also. pots also have problems with sleep, lot of symptoms cross over with pots and CFS. plus i have a Bazar immune system reaction which by few allergists i seen might have mcas which (there not clear yet) and all the reaction and body fighting things make you MORE tired. it be a real pain if i have CFS on top of all this(which is possible according to doctors) 😞
I've had ME for 7 years since I was 29, it's completely destroyed my life, I can't do anything,
I find that loud noise or constant noise such as people talking a lot can trigger my cf over time. Also I can just sit still in a chair and if in my head I think about all I have to do in a day and panic about it, it also triggers my cf. I’ve had cf for about 20 years and I’ve learnt to not overdo the exercise, not to listen to loud noise for long, and to try and eat well. I’ve discovered that when I get a ‘sick in the head feeling’ it’s the sign to slow down. In 2017 I had one of my adrenal glands removed due to a growth that wasn’t cancerous. I was hoping this was the reason I was ill and once the adrenal gland with the mass was removed I’d be better but alas I still have cf. I think it’s something that I just have to live with but now I can manage it better as I have learnt to listen to my body better
I tried so many things. I just feel like my body has been giving me the middle finger for the past 20 years of my life.
I can make it less bad, but I never get to be normal.
I got mono back then, and was sick 2 years. I was never the same afterwards.
I don't know why someone can't just invent a damn pill already, pharma companies make so many others.
Just hearing about this, but I've had these symptoms since I was in 3rd or 4th grade. Falling asleep in school, on bus, in car, after school etc. anxiety, awake at night, digestion issues, trouble staying awake driving, weight gain. On and On and On
All of these symptoms are from the same underlying infection that you were "not" properly tested for. Identifying, treating and fully eradicating the true underlying cause is the permanent solution. Don't you agree?
did you get a diagnosis?
@@elise9537 A vast majority of patients never get a proper diagnosis when doctors refuse to properly test for the true underlying infections.
I get sick of the crashes! Have a decent day, overexert myself and 3-4 days of fatigue, depression, unrestful sleep ect! Just feel like crap “malaise”
I became ill with m.e at the age of 6 after a bout of the shingles virus, I never recovered, doctors didn’t listen and blamed my symptoms on attention seeking and a mental illness I then got forced to exercise and went through so so much neglect by ‘medical experts’ It made me so ill that I could of died.
I’m now 15 and I’m mostly bedbound, need a wheelchair and need a ng tube.
Myalgic encephalomyelitis is a much better term. CFS doesn’t present the severity of the illness, as it is not just fatigue that is just one symptom of this complex condition the people who first made CFS the official name have said they regret it due to those reasons.
also the associated conditions include a lot much such as, MCAS, POTS, many autoimmune diseases, and much more then I can’t remember off of the tip of my tongue.
the illness being falsely identified as psychogenic has caused decades harm and people continue to strengthen unacceptable stereotypes and misconceptions. It has delayed decades worth of research that could of found something vital.
I’ve lost my life to m.e.
Try Wim Hoff method if you haven’t. I don’t know if I have CFS officially but I have experienced symptoms which recently got much worse. I have seen improvement with WHM.
I've had covid in nov 2020 and mono a few months after. A year later things I really started to break down. I'm unable to live life the way i'm supposed to.
Everyday is hard since getting COVID-19 from an unvaccinated child. The stress, long haul Covid.. it effected my heart, blood pressure, my right eye and my kidneys, justed passed another stone. Now I have interstitial cystitis of the bladder. Finally, DX 2018. Was sick most of my life.. I had mono as a child. So glad we can text with peers😁
I contracted Ross River Virus after being supper for a mozzie. Blood tests also said that I had had glandular fever at some point, I have never had it. My immune system was out of wack because of the Ross River. I was diagnosed with CFS along with Fibromyalgia, I am always tired, never sleep well and get pain in weird places for no reason. I have always had IBS and clinical depression (unmedicated) , as have gotten older the lack of sleep is worse and so is the pain. The best advise that I got from the doctor that diagnosed me was to keep as physically active as possible.
RRV is one of the known triggers for ME/CFS.
It is also possible for EBV (glandular fever), another known trigger, to exist asymptomatically in its milder forms.
Movement is beneficial where tolerated, but exercise as we know it is something to be very careful about especially as the post-exertional mailaise may not kick in for a couple of days.
@@DrakeN-ow1im I never had EVB but that shows up on blood tests for RRV. I had covid a couple of months ago and my ME/CFS is quite bad now. I admit that it is becoming a struggle to keep moving
Thank you for making this 🙏
I honestly believe this is what’s wrong with me. I have all the symptoms.
My observation is that CFS is very similar to MCAS, because of the many pathologies involved.
As most of the comments have noted, GET and CBT are no longer recommended treatments for cfs due to their potential harm. Cfs/me doesn’t really have any officially registered treatments or cures, BUT one of the only things that has repeatedly been proven to help is pacing, which in some places is seen as an actual official treatment :) It would’ve been a very important point, if not the most important, to include in the treatment section due to how it’s one of the most common treatments when it comes to this illness. Pacing is the one thing that all improved cfs patients have in common.
Another, maybe a bit more nieche but still known, treatment in the cfs field is LDN. It has little to no side effects, and around 75% of patients see some sort of improvement while in it. There’s even been cases of full recoveries, though we can’t know for sure if it’s the ldn or something else. I’ve been on it since July and I’m finally nearing the recommended dosage, haven’t noticed overall improvement yet but I’m still staying hopeful :)
Some days I feel great, I ride my bike go for a nice long walk, have the energy to do all the things I used to could do. Then the next day it’s like a train hit me mutiple unexplained body aches, indigestion, headache. I just want to lay in bed all day pair that with other conditions and environmental stressors. Something’s bound to happen
Same
This was a good video initially - lots of pretty sensible physiological data, but you let yourself down big-time at the end with your recommendation of CBT and GET as “treatments” - GET now debunked not only as not beneficial, but actively harmful. ME (I refuse to call it “chronic fatigue syndrome” which is an unhelpful label which perpetuated ignorance both in the medical profession and the general public) is the only physiological condition for which a psychological “treatment” (CBT) is recommended as a front-line treatment. This proves that the doctors are still confused and ignorant about it. CBT may be very helpful as an adjunct for managing the natural negative feelings anyone can experience with chronic illness, but not as a front-line treatment for a complex physiological disease.
You do not mention pacing. This may not be a “treatment” as such (anyway, there is NO treatment for ME), but it is a very useful skill to help one manage the condition on a day-to-day basis, and can be beneficial not just physically as one learns to live within one’s energy envelope and avoid the dreaded “boom and bust” scenario, but also mentally, because it can give one a boost, and perhaps a sense of achievement that one has managed to do more than expected. That’s my experience, anyway.
I think you need to do more research, and then edit and update this video. What you are saying is extremely confusing to a lot of people. Because of this, I feel obliged to hit the “dislike” button - not something I do lightly, or frequently. I consider this to be a serious matter.
"I think you need to do more research, and then edit and update this video. What you are saying is extremely confusing to a lot of people. Because of this, I feel obliged to hit the “dislike” button - not something I do lightly, or frequently. I consider this to be a serious matter."
Quite so.
I was diagnosed with cfs after a very bad case of Epstein Barr Virus. That was over 25 years ago. Drs (there were many) found that “good” sleep was the key. A nightly sleeping pill to ensure that I fell asleep and stayed asleep. Relaxation breathing and meditation. I am currently on no other medication and am able to live a normal life.
Wow! That's amazing & wonderful that helped so much with your healing. I guess ppl are different, as having a regular good amount of sleep has never made a difference with my own ME/CFS. This illness is much more complicated than mere sleep deprivation.
@@skylark5789 I wonder how/why. I've been on sleeping meds for over 10yrs & they certainly haven't helped with the CFS symptoms. In fact I'm currently trying to get off them to see if that helps at all. I think they're probably better than if the person is otherwise having almost no sleep at all, but they still do have side effects. Just mentioning so others with CFS won't just shove toxic pills down their throats in the desperate hope that they'll 'fix' things.
^ Also, a lot of ppl are prescribed benzo's to help with sleep, without being told of the dangers of these meds. They are highly addictive & are a nightmare to get off (takes over a yr...my Mum had to have Methadone treatment to help her body survive the detox process). Please ppl do your research.
If only it were that simple.
Excellent and very helpful. Thank you
I'm struggling with energy, feeling rested, weakness, and extreme pain. But I still work. I just suck it up and move on.
Thanks
Very informative 👍
Thank you as always. You are the most helpful
Chronic fatigue syndrome is not fun. No matter if I want to stay awake sometimes I just cannot stay awake. I just have to lay down and go to sleep. I have to fight rheumatoid arthritis and osteoarthritis not counting my other medical conditions.
Thanks you have given me dignity I can’t tell you how much that means I hope you get my gist…🙏
My fibromyalgia got worse with the covid injection!! Barely 50 and struggling daily!!
My CFIDS/fibromyalgia and sarcoidosis got better since getting the mRNA shots. 3of them so far. I have more energy with less crashes. I’ve had this 30 years. I’m still not near normal but just better.
Since you are responding negatively to covid shots, take extra care of your heart. It gets really difficult with Fibromyalgia.
I did not take the shot, in part because my older sibling had a bad reaction to the Pfizer version. Upon getting covid it really wiped me out and I had long covid. It took about 3 months to clear.
Please update the diagnosis and treatment of MECFS.
The worst is the damaging advice of GET and CBT.
CBT might help with management but is not treatment, GET has been disproven and a more customized approach is required, depending on the systems impacted.
Look forward to an updated ending to an otherwise helpful video.
People are healing autoimmune with a the Lion diet (carnivore)
Is it possible that SSRIs have a role to play in this condition?
Fermented vegetables and kombucha and greens daily helps a lot, and lots of tea.
But any time I have sugar, processed food, or a cup of coffee I feel symptoms again, and I’m bedbound if I have two.
Hydration from quality water is huge for me too
Thank you!
I have both diagnosed in 1999. It is misery but this is a good video explaining in about the disorders.
Mine started after 4 years of working 60-70 hours a week, and then having 2 knee surgeries a couple months apart. It lasted about 3 years, and I was mostly in bed.
I finally began to feel better, but when I moved to a new house 3 hours away, I had a brief relapse that lasted a few weeks.
Recently, I tried alternate day fasting, and after two weeks (6 fasts of 36-40 hours), I seem to be having another relapse. Fasting is a stress on your body.
I didn't even know this existed.
Thank you.
Appreciate this video very much. I will, however, point out that CBT and GET have been proven to be harmful to those of us with ME/CFS. Thank you for spreading awareness!
Seconding this! This is still a very common misconception in the medical field, and it has led a lot of patients to a pretty bad shape :( I was never officially prescribed GET, but I forced myself to be active before my diagnosis due to a doctor’s advice and it made me completely bedridden & wheelchair dependent really fast. Desperately hoping the knowledge of the danger of those therapies would become more widespread eventually
I was diagnosed with C.F.S/M.E/M.C.S back in 2001 due to being exposed to Benzene & V.O.Cs in my then work place.
Did you do chelation therapy?
@@bluesky7704 No but I think that I did look into it & it was expensive:-(
@@jonathanhadley2555 beware of snail oil salesmen. Truly.
@@lindatannock All above board with a well known Dr, who specialises in M.E/C.F.S/M.C.S & other Environmental illnesses, thanks
I don't agree with that trauma causes this because I wasnt abused or had any trauma. When I was 25 I donated blood and my donor card came in, it said they couldnt use my blood because I had Chronic Fatigue and they werent sure whether this disease could be passed through by blood. So then I took this info to my doctor who did tests and agreed that I did have Chronic Fatigue. I also have now 3 other auto immune disorders.
I think they mean they it can be one reason.
How can they say you had ME/CFS at the doner place, when it doesn't show up in blood.
People are healing autoimmune with a the Lion diet (carnivore)