After Unrest - Ketra's Story where health professionals & patients unite. Quiet ver. in text below.
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- Опубликовано: 24 июл 2024
- See below for contents, time stamps, a low sensory version without background music, printable brochures and more information.
“AFTER UNREST” is a short documentary about Myalgic Encephalomyelitis (also known as ME/CFS or chronic fatigue syndrome).
This documentary tells Ketra’s story (pictured), and includes talks by health care professionals that have helped Ketra with her illness. It touches on current research and also features Australian patients, their stories and perspectives on debilitating disease. It provides a toolbox of information to help practitioners, patients and families alike.
Severely affected ME/CFS patients suffer from noise sensitivity and struggle to listen to speech, especially with background music. For them there is a low sensory version of After Unrest without music: • After Unrest - (Low se... .
There is also a transcript that can be downloaded from youtube.
Contents:
Introduction
Ketra's story - 01:54
Health Professionals: 6:57
01- What do many doctors think when they see patients with Myalgic Encephalomyelitis, also known as ME/CFS or Chronic Fatigue Syndrome? 07:13
02- How is ME/CFS diagnosed? 07:33
03- How can General Practitioners help ME/CFS patients? 07:55
04- Are there any tests that can be done to aid a diagnosis? 08:36
05- Can exercise intolerance be measured? Many ME/CFS patients find exercise makes them worse. 10:36
06- How can heart rate monitors and pacing help ME/CFS patients? 13:03
07- Can ME/CFS patients benefit from exercise? 14:26
08- What does post exertional malaise (crash/payback) look like? 15:50
09- Are there any blood tests or biomarkers for ME/CFS? 16:54
10- What do NCNED researchers understand about ME/CFS pathomechanisms? 17:26
11- Could faulty ion channel receptors cause the pain in ME/CFS? 19:06
12- What does NCNED research say about treatments? 20:14
13- Is there any role for psychology in ME/CFS? 21:13
14- When even food triggers your symptoms, what can you eat? 22:04
15- What does research say about allergies, intolerances and sensitivities? 22:51
16- Are sufficient funds directed towards ME/CFS from the Australian medical research council? 23:32
Australian patients & their needs 24:10
Key Points 25:46
Resources 25:54
Dedication 25:59
Credits 26:06
Thank you for watching!
- Ketra Wooding
Note to Gold Coast residents: Unfortunately, Dr Georgina Gibson, the general practitioner who features in this video, is not taking new patients.
ME/CFS HEALTH on Facebook: / mecfshealthpage
Resources:
- Getting Started with Heart Rate Monitoring
- Printable Brochures featuring health professionals, key points and CPET testing results.
- References
drive.google.com/open?id=1AQC...
For anyone looking for a version of this without the background music, check out the Low Sensory Version of After Unrest: ruclips.net/video/5bhYYwsD8KU/видео.html.
I'm recovered now, but I was diagnosed with CFS in 2018 and was bedridden. I had a different "kind" of CFS than Ketra or Jennifer Brea, but I can identify with many things. Trying to talk was almost impossible sometimes. One-word answers felt completely brutal. I remember sitting down and not sure if I'd ever be able to stand up again. I couldn't control my body temperature or nervous system. I thought I was dying every day. CFS hit me during a time when I felt my most excited and alive. Life was good and then it hit me like lightning. The worst thing someone could have said to me at that time is: "it's all in your head." And I was told that... a lot. I learned how to pace myself and I improved, little by little. It seems we all have something in common and that is: many of us have lived our lives at 110% up until our illness. We have that kind of personality. This is not unusual to also see in other diseases, as well. The emotional care that we need to take for ourselves cannot be understated. I now look back and realize that I was resisting working on myself emotionally simply because I felt the need to prove all the time that my CFS was NOT a psychological issue. I didn't completely recover, however, until I realized that my personality-type encouraged myself to run on empty. I then had to dig deeper to understand why I felt that way. It was a long process, but it was one of the most helpful things I did with my CFS recovery. I only mention this because as ME/CFS advocates, we push for a physical cure, which I want more than anything. But we must understand that healing happens on all levels. In our defensiveness, I don't want people to lose sight of the importance of healing at the physical (and surgical if that's needed), emotional, mental, and spiritual levels.
I healed once I told myself a different story to the one I was telling it
excellent, , I never thought I would live to see support by the medical community. crying
yeah? where the f is it? in reality? and finances. i can't even call docs anymore. and hope costs too much.
Not in the UK.
@@schpoingle First, I love your "name", here. Second, I am a doctor, and I have to struggle and fight to have my own ME/CFS recognized, respected, and dealt with just as much as anyone else. So I agree with you 1,000%. Sometimes, I even hate hope, for giving me false dreams of returning to the profession I utterly lived for, but that will never, ever be, and it hurts. You understand. You know what I mean. Because we with ME/CFS live the reality.
@@AniBAretz I know exactly what you mean. I miss myself.......
@@ksize3147 I send you a hug, an eHug. Hugs are therapeutic, even if they're not cures.
Wonderful doco, thank you. It makes me weep that so much is already known about ME/CFS, yet social security and disability organisations don't accept it as a genuine physical disability. My GP has no idea how severe ME/CFS can be. Most doctors I've spoken to regard it as a psychological issue. I've been offered CBT and antidepressants, with the assurance that they will 'fix' me. General practitioners are our first line to seeking diagnosis. It is they who need to be better educated on the nature and symptoms of ME/CFS.
So well said! 99% of gps, probably even 100% are totally ignorant! And few are interested to even educate themselves. I gave them a 5 min video and they couldn’t even watch it! One stupid gp, said there’s no need to watch it as he already knows. One time after I had fallen and had an acute injury, he wouldn’t provide pain relief and turns his computer to show the recommended medication for Fibromyalgia which was amitryptilin. Equally ignorant are Specialists. I have the misfortune of having cancer on top of it and the
Oncologist asks me how I am, why not good? Doesn’t she get that ME sufferers are living in agony everyday? Plus that’s a Caucasian medical on7! I have severe daily nausea! Worst still, most Australian GPs are immigrants from 3rd world countries and they are forced to work in rural towns so patients suffer as these drs do not have the experience or training and working towards getting their Australian licence and citizenship is more important to them. This Iranian oncologist wouldn’t give me a day off, had no empathy or understanding of ME, kept quiet during the multi-disciplinary meeting about a clinical trial she knew of.that would benefit me because it was related to medical and not radiation oncology. She wouldn’t provide me with medication for nausea caused by.the treatment and told me that if I was too sick and fatigued to attend radiation, thney would note down that I refused to come.. Thank goodness. I went elsewhere and the oncologist was more supportive and willing to give me a rest day if the fatigue became overwhelming.
Exactly why does no one apart from patients, get that? I have a gp that keeps arguing and invalidating my symptoms . After explaining to him numerous times that I’m bedridden and housebound, he just won’t accept it. We’re on a Telehealth appointment, I’m telling him how my referral was rejected at a public hospital 1.5 hrs drive from home and I don’t have much support. There’s no way I can travel on public transport when it’s a 3 hour journey. After all that, he asks me, can you just turn up there? I ask, which hospital do you mean? He says the hospital that’s only accessible via public transport/train 3 plus hours away. !! Jesus, how can he not get it???? In fact, this is just common sense, not even specifically related to mecfs!!!!
Social Security does indeed recognize CFS as a genuine disability, and you can get it if you check enough of their boxes/fulfill enough of their criteria. I found this website to be an INVALUABLE resource to help navigate the process of applying for SSDI. It is chock-full of step-by-step information, and written with a can-do attitude. I (and the website) highly recommend getting a doctor to fill out a RFC (residual functional capacity) form specifically tailored to ME//CFS. These forms can be found on the website. howtogeton.wordpress.com/social-security-disability/
@@leasalonga2473 You are a racist, and no-one cares about your opinion.
@@leasalonga2473
@Lea Salonga
I understand your frustration, PWME are constantly questioned and often left to be our own advocates. This is especially common for those of us with severe to very severe ME/CFS who aren't able to be seen by medical on our worst days. I'm going to link some information in another reply that I hope you'll find helpful. For any reason it doesn't go through please reply and let me know so I can try another way. It also goes into detail regarding the possible harms caused to us by Healthcare Providers doubting us, often subjecting patients to treatments that can cause us harm and even irreversible damage. It's hard to understand how a disease that has been studied since the 1950s hasn't progressed.
One last thing Lea, while I understand your frustrations allow me to clarifya few facts for you. Whether a doctor be from the west or what you consider immigrants from "3rd world countries", they must qualify academically just to enter medical school, if in AU than AU requirements must be met -- including training and experience. You'd be surprised how many countries you may have been taught to believe are 3rd world are at minimum just as advanced as we are. No matter urban or rural the people/patients have the same medical needs. It could be argued working in rural areas often brings more experience; if said area doesn't have all the amenities of city hospitals, and/or doctors are able to spend more time with their patients in a slower-paced environment. Whether a doctor is working towards an Australian medical degree and citizenship shouldn't concern anyone what is important is they're qualified to do their job and treat their patients well. As you stated the majority of doctors do not know the first thing about myalgic encephalomyelitis.
As intolerable and frustrating as you found it to have doctors make assumptions about you perhaps you should offer others the same courtesy you expect.
Everything in this video is me in a nutshell. I have been so weak in bed that I felt as if I sunk inside myself, I have been so thirsty but did not have the strength to bring water resting on my chest to my mouth for half an hour or more whilst I mustered the strength to make my arm move, all the time my heart racing like I just ran a marathon , whilst feeling like I would die of thirst. There are so many things I have suffered over the years the only hope I had was left in the hands of my 14 year old daughter. My Daughter was amazing over the years, my rock and life line. As soon as she was old enough she jumped out of planes to raise funds for ME research uk. She is 26 now, still my rock and I have survived to have a quiet life listening to the needs of my body. I stayed focused on building up my stamina and a small life within my home as I paced my self. The first positive thing I did was strip my life down to nothing, no people just my Daughter to support me in our home. We got rid of carpets and chemicals, noise ect in the home, stopped buying processed food and made everything as simple as possible. My exercise consists of stretching muscles every day whilst still laying in my bed that way if I feel exhausted I could lay there as long as it takes to recover. My trips out are mainly alone in quiet surroundings that are easy to reach in the car. Enjoying nature sunshine and peace as it’s good for my well-being, away from hustle and bustle because it always triggers my symptoms and can disable me in minutes. I now know myself and my limits so I keep it real for my health, everything is short and sweet and I return home as soon as I start to fade or I rest in the car, my life is tiny but I am happy in my bubble now. I get judged but I don’t hold on to negativity as it’s bad for my mental health, I leave my past behind and each day is my first day, it’s easier to cope like that, I want no baggage so I don’t engage with others unless it is briefly, as I get overwhelmed easily and I am also allergic to perfumes so it is tricky, yes 👍 it gets lonely at times, so I stay focused on what I am doing when I feel up to it and what I want to achieve in my small life, I study new skills from clever people on RUclips at my own pace reinforcing it when I forget what I have learnt. Forgetting things is normal for me, I leave myself notes so I can achieve my set goal, I am like the tortoise 🐢 and others are like the hare, I always get there in the end by leaving myself a note it might take me months but I keep trying to get there. You tube puts me in touch with real people out there that are doing things with the same interests, I watch what they are achieving it makes me feel hopeful. Mentally I feel as if I am supported as I could message them if I want to, which is very helpful, I don’t do that but just know I can. It stops me feeling so cut off. I could not watch any tv for over 10 years because of light and sound and everything is to fast paced for my brain to process. so Now I found I can cope with RUclips it is great as I can take it or leave it and can keep coming back to the same thing when I have good days. It’s all about building myself up to cope with my life and having an interest that gives me hope and self worth. Having ME is very complicated and difficult to explain as it affects my whole being, so coming as far as I have is a real achievement for me, staying patient over the years focused and strong has got me here today. Excepting I have a disease was very hard and it took me years of crashing for it to sink in. I sit in silence for days just to have a few hours coping somewhere nice. This is my life now. I don’t expect anything other than what I can muster. I feel like a small boat alone on the ocean that weathered a really long storm and now the sea is calm, with the odd day with vertigo. Enjoying the good days throw away the bad, keep moving forward because when you look back you have got somewhere and you can feel proud of yourself. People suffering with ME should always Pamper your body, turn off sound, wear sun glasses, do what ever it takes to make your body feel rested, softer towels softer chair softer bed, sheets, socks, it all helps in the end to de-stress your brain from becoming overwhelmed …. It may sound funny but These are all helpful tips. My attitude is that I have to help and save myself the best I can … people around me would make me so much worse, so no one is coming…….all the clinics, doctors, hospitals, therapists ect in the past nearly killed me. I know what is best for my body I can feel it inside me each day, so I am plodding on in this small way taking my time to grow. I hope money is freed up for more research to find a cure as it would be nice to be a social butterfly 🦋 again but I won’t pin my hopes on it. So I will keep moving forward 🐢. Staying focus on achieving my goal to succeed in all I do.
Days just disappear,
My famous last words… go to bed and start again,
tomorrow is another day.
Very well done!! It's too late for me, diagnosed since 1998. But how I hope, my daughter (diagnosed 2015, age 15) will see the day the funding for ME isn't at the bottom, the treatments for ME aren't just to be abandoned by Drs, Social Security (US), friends and often family. I hope she will see the day understanding comes.
I'm very sick and forced to work p/t to support us, Social Security says I'm not sick. I hope she'll see the day, when we are believed. I want her to be able to do her art, her music, her math she loved and excelled at these things, her friends (she has only one left).
Most of all, I want her to not be abandoned by society, Drs, and now there's even a threat to remove all pain control and I wish for her to at the very least, have pain control.
This isn't a sore muscle. This is every nerve and blood vessel in pain. I love your video! I love your effort to make a difference! Thank you!
Fabled Creature
I was dx'd in 1997. Over the years I had tried EVERYTHING! Recently I started using molecular hydrogen and it's provided some relief. I wish you the best
I have cfs and still continuing... It started in 7th grade and my grades are going down due to extreme fatigue and lack of concentration
If you mean U.S. Social Security, check the website of the Massachusetts ME/CFS group for advice. And private message me (I have no idea how that's done, but maybe you can figure it out or get someone to show you) for my own experience.
@sidgdansk And your belief is based on what?
@sidgdansk Just out of curiosity, where, where and when did you get your medical degree? I will be happy to let that school know of its need to update their curriculum. The real experts, from clinicians to research scientists of world reknown, say you are wrong, and so do we patients, especially we patients who are also doctors.
Thankyou for this small documentary... It makes me feel less alone; It’s such a isolating disorder… My life has been slowing but surely spiralling out of control. Most days are a total struggle for me. Just getting out of bed takes so much of my already limited resources. I have been rejected twice for a disability pension, and don’t have the energy or mental cognitive function to keep fighting them because they don’t understand that I don’t have the capacity to support myself. My bank account is dwindling. I’ve tried to got back to work 3 days a week, just to get some income, but as soon as I get near, noise, light, smells, pollution, cleaning chemicals I react. Not to mention, with a compromised immunity it doesn’t take long until I pick up colds and flu…. And then I’m back in bed again, even worse…. I’m not sure I will be able to cope much longer. I can’t tell you how many doctors/psychologist/immunologist’s I’ve been too…. I can’t afford it anymore. I never imagined that I would end up like this. It’s so lonely and debilitating. You wouldn’t wish it on your worst enemy. I could win the lottery tomorrow and become a millionaire, but it would mean anything, because I’d be incapable of enjoying any of it. When you don’t have you’re health, you have nothing.
Do you have hypomobility?
Many, many thanks to Ketra and to all the wonderful people who contributed to making this film.
well, in my opinion, the best help a doctor can give to a patient is to admit that they don't know what's going on. If not for the nature of the condition, I's probably kill myself. But luckily I have no energy. I have been blaming myself for years that I just got lazy. Even though it was completely illogical. I was an athlete and a dancer. I hardly ever used transportation. I always used to walk everywhere. Now, I am barely dragging my feet to the store to buy groceries. In fact, sometimes my exhaustion is stronger than my hunger!
isnt that awful the thought of finally getting out is great after so much time in bed, but paying for getting out 3 more days in bed amd 6 b4 feeling like did b4 o went is to much to have to pay for few hours out,
THANK YOU
Thanks for sharing the “real story” of ME. No one can begin to imagine how devastating it is! I was a very healthy, active RN, but after a viral illness at the age of 48 I had ME. I’d never heard of it and spent the first years trying to figure out what was wrong. No specialist was able to give me an answer-I was certain I must be dying from something to be so sick. Your description sounds exactly like what I was going through! I’m so sorry this happened to you, but thank you for helping the world to understand how desperately sick we are even though we look so “normal“!
Christina Cooper. It is like you told my story. I have been affected by this for 39 years. I coped and had a good life despite it's waxes and wanes for 2 1/2 decades, until I couldn't anymore. I will never be a nurse again or be able to do ANY job consistently.... it was devastating to finally, finally accept this, and I still miss me. I make sure to gather my Gratitude's and humor to start each day.....everyday. I try not to goto MD's because they so often make things worse instead of better, though they do try. I stopped trying to explain to anyone what I have and how it affects my life. Who could even fathom it, unless they have went through it. As doctors and nurses are taught to rationalize medical problems and there is no rationalizing CFS/ME. I hope in the future a test will be found and a pharmaceutical invented for this, that is the only way it will ever be seen as a real disease. Even fibro was not "legitimate" until they came out with Cymbalta and Lyrics to use for it, also like MS patients who were thought to have psychological paralysis.........I have hope for future sufferers. Wouldn't wish this malady on ANYONE!
@@ksize3147 💜
One of the things that really bothered me the most when I was at my worst was that smiling was enough to bring on symptoms. Its confusing when your body punishes you for feeling happy
How did you progress, how are you now? I’m in hell.. a year bedridden and the neurological symptoms and pain are intense. How bad were you? How did things change?
Just going through a resurgence after a very stressful time.
It's awful.
Dr's in the 90s where so mean to me in those early days.
4 years in bed.
Too late for me also--I've had CFS (diagnosed in 1994 w/ 4 subsequent confirming diagnoses). That's 24 years. Now at age 70 I won't benefit from the research. I've lost so much but then again I feel that I've been lucky to remain independent for so long by doing lots of "work-arounds" & paying scrupulous attention to diet. I dread the day I too will be in a nursing home. But this disease has made me stronger than I ever thought I could be. I will manage &, perhaps, try to educate others w/my story & the stories of millions!
Are you in Sydney?
diagnosed in 1988 yes 70 lost most my life to this hanging on every study, went college wrote my own study on this got published but still ill myself. facilitated suport group started it local hospital til i coudnt go any longer. quit in 2015. had 440 people in group. more couldnt get out to group homebound, hope is better future for others. before diagnosed told seek psychological councel, get my hair done have husband pay more attention to me. what a insult. hope your having a good day.
I’m from the UK and I’ve just had my 37th surgery on 02/08/19 and my GB needs to come out next too.. I have Lyme Disease, hEDS, MCAS, ME-cfs since 1995 since I was 22, Fibromyalgia, HPV SCC (squamous cell carcinoma), Erythromelalgia, Neuropathy, ileus of bowel needing medical machinery/devices to empty waste, Gastroparesis, SPC catheter, mast cell issues, chronic pain, crazy allergies in the uk I’m left permanently bedbound now 10 years and left to waste away and rot! I feel for all these beautiful people in this film ♥️ CBT & GET made me worse... I’ve tried so many treatments over the last 3 decades. I’m battling to get disability benefits (PIP) here in the uk too after being refused twice thus far🤦🏼♀️🔫 X💙
"This is wonderful and so moving. I'm in tears. I have sent the link to my GP and a doctor friend. Thank you so much, brave Ketra!
My own family will still not bother to watch Unrest, watch or read any information that may help them understand the struggle of Severe ME.
I've heard it'll make them feel bad, loved ones who say they're tired of trying to call... as if I'm going through this only to inconvenience others.
I want my life back.
Unrest is quite a sobering documentary. My hope is that After Unrest is a helpful chaser, in that it gives health professionals and family members the information they need to support patients. MECFS is such an isolating disability.
I worked full-time as an RN until I was 50, when I got the flu that never ended on 12/24/09! It happened despite (or perhaps because of) getting yrly flu vaccines (plus the H1N1 flu vaccine that year). I’d always been incredibly athletic- at that time I’d been bicycling 200 miles wkly for years. I was looking forward to celebrating Christmas with my daughter, her husband and my first grandchildren, 9 month old identical twin boys! As I was leaving work on Christmas Eve, I noticed a strange heaviness in my legs that I’d never experienced before as I struggled to walk across the lot to my car! It felt like I was wearing fishing waders filled with water! Each step felt like trying to lift a dead tree trunk. It was like having Parkinson’s disease- my brain said walk, but the message to my legs
was delayed! The neurologist said all my reflexes were intact, so that was no help! I learned later, this is called paresis- like paralysis, but you can still feel! I made it through Christmas Day, but then the flu knocked me out! The pain was all over, but mostly in my legs, emanating from my bones outward! During the first year I seriously considered cutting my legs off or suicide to escape the pain- it was that bad! Other symptoms: Temperature dysregulation- despite living in temperate San Diego, my hands and feet were ice cold- 5 years later I developed Reynaud’s syndrome; Core body temperature dropped from 98.6 to an average of 96.6 to 97.7°; I was too hot or too cold; Profuse sweating, often requiring hourly pajamas changes remains a problem (It’s not menopause); Severe Fatigue-Bathing wipes me out for hours, I live in bed or on the recliner; Sleep dysfunction: Initially couldn’t stay asleep more than 2 hours at a time despite being exhausted, later suffered episodes of hypersomnia and circadian rhythm reversal has persisted throughout, I require 10 to 12 hours sleep; Sore throat with red crescents on both sides for 8 years-now with exacerbations; Weak, hoarse voice first 4 years- now during exacerbations; Photophobia plagued the first year, now only in severe exacerbations; Lost half my hair the first year- it never came back; Noise sensitivity the first 3 years; Poor appetite, only wanted green salads and oranges and developed a sudden aversion to meat and alcohol (very light drinker before); Developed POTS requiring 1 L of normal saline every other day via IV. Several inflammatory problems occurred during year one: chest pain- costochondritis, sudden onset interstitial cystitis, right carpal tunnel surgery, right thumb joint surgery and left knee surgery for torn meniscus, New onset of severe migraines requiring ER treatment remain a problem.The worst loss of all has been the cognitive dysfunction affecting my concentration and memory!
Specialists ruled out major diseases and diagnosed post viral syndrome. I remain about 90% bedbound with very rare remissions when I can tolerate being up.
I too had almost the exact same experience with one particular very distinctive day shortly followed by 8 months of various viral infections one after the other until an M.E diagnoses. It’s niggled at the back of my mind, that day, but I have never mentioned it out loud as the viral infections didn’t start till almost a week later. Very interesting.
Treat it aggresively with Immunocal weigh protein, IV glutathione, B12, T3, Abx. I got better after 16 years so you can do it hopefully.
@@MP-uo6qd .....
Thank you Ketra and team. This 30 min video is a clear summary which will have many uses and flow-on effects. Thank you to those who sacrificed their health to make it happen.
Thank you so much Ketra for putting this Doco together and sharing with us to help bring awareness and understanding of this torturous disease.
I’m watching this in bed feeling exhausted . I’ve spent almost all this day bed . Thank you Ketra , great that you have made some improvements. Sorry you are in an aged care facility , it’s good they take care of you but I hope you will be able to live as other people do independently one day . I live just down the road from the GC. I’ve struggled for years to try and obtain disability pension . I cannot work , it’s impossible but I’m not believed . Sorry I tuned out when exercise mentioned . I cannot , I could walk for about 20 minutes most days but no longer . Goodness if you can do your basic housework , groceries etc that’s great . Exercise is a luxury many of us simply cannot afford . Professor Stains hurry up , we need a test please . Exercise training ! I was such a fit active person when I became ill rather suddenly , exercise is not a treatment , it will make most worse .
Thanks for your kind comment. I'm sorry you tuned put when exercise was mentioned. The heart rate based pacing approach usually means increasing the amount of rest you're doing, and avoiding aerobic exercise. Unless we as a patient group can justify the disproportionate amounts of rest we need then it will remain difficult to get adequate support at home.
My heartfelt thanks you to everyone involved and to all of those who take this crazy ghostly chronic illness seriously! Ketra you are especially so brave and amazing! What an incredible achievement and contribution you made despite your illness. It will give hope to so many.
Govt NDIS this is a life long disability for just so many of us much hope, healthier days, love and may light shine on us without pain, even if only for awhile ...........thanks Ketra mighty effort feef
.
Thank you. Diagnosed in 1997. Never found almost any help. So awesome to find this community.
Hi Ketra, thank you for putting this together. I have had ME for over 35 years.. it was really bad for about 10, but i still have to limit most things. It has now affected my heart, last year i spent 4 days in the coronary care unit because i showed signs of a heart attack but all tests came back normal. It seemed that part of my heart had expanded and was not able to pump. I believe it is a long term condition from the CFS. I spend a lot of the day resting, it is a tragic illness, give me anything else instead.. at least then people believe yoy and you might get some support. 🙏🏻💕i
Wonderful Ketra. You are truly an inspiration.
It took me yrs to get a Dr. To listen to me. I walk in his office for my 1st visit rready to fight to be heard. I told him that I had Chronic fatigue and Fibromyalgia. If you have one you have the other. In 2011 I had accident while driving. The c/f had effected my tbinking that morning and I was so tired that I could stay awake. I was 2/3 of block away from home when I close my eyes for a sec. Open my eyes to find myself smashed to a tree. Destroy both ankles broke a arm and ribs. Drs. Were sure if they save my feet. Now have plates in both ankles and both are fused. My husband is my care giver. I will unable to walk for rest of my life. Still have all the other prombles. My faith and my family is what gets thru everyday. Live in my bedroom. Sorry I made this so long. Sad other people just don't get it😉😣
This is remarkable, thank you for sharing so much.
I was diagnosed in 1982 and was bedridden for 12 years. My saving Grace was that my Doctor knew me before the onset of my worst symptoms, and knew I was not just depressed or psychosomatic. I had improvement and a three year remission but I relapsed following a surgery. I am better than I was, especially cognitively, but have not known a day without severe pain since it started. I try and regulate activity and can avoid some crashes, but I still get it wrong and end up in bed in a dark room for weeks at a time. Flotation and sensory deprivation helps me through a lot of it, and massage therapy when the pain is not too severe.Still hoping for a cure someday.🖤🇨🇦
Do you get fybromyalgia pain
@@Truerealism747 Yes, I do. It is part of the whole package. I do mitigate the pain with hydrotherapy and other techniques when I can, but sometimes the pain gets ahead of me and I have to resort to pain meds.🖤🇨🇦
@@tamarrajames3590 are you hypermobile by any chance highly comorbid with Asperger's ADHD for which I all have just lost my mum to severe ms heds Asperger's to
@@Truerealism747 I have hyper extension, but not ADHD or Asperger’s. I’m so sorry to hear about your Mum. My electrolytes go out of balance a lot.🖤🇨🇦
@@tamarrajames3590 I didn't no I had asperger's until sins diagnosis and the link no with hypomobility heds.i had none normal ADHD symptoms just a natetentivevas a child check out Dr lenz ADHD fybromyalgia connection 60 percent comorbid up to the hypomobility winds up central nervous system larger amagdalia OCD as a child is link to j Eccles hypomobility CFS fybromyalgia connection to hope this helps thanks
Thank you so much for the dedicated team who are working hard to help us, I am crying also, have suffered for too long with ME/CFS almost given up hope (Joan) Raymond is my carer.
I do not think a day goes by that I am giving up more and more. I hust do not think that I can bare anymore
Thank you Ketra, and all those involved with the making of this video...we need to get as much information out there as possible!
Please keep challenging the 'norms' of protocol...our ME/CFS community needs far more underdtanding.
Bless you.
Understanding, that was supposed to say!
Thanks Jo, let's keep getting the word out there!
I totally appreciate you!!!
ME CFS FM 41 YRS.
I have been ill for most of my life.
Hope is all I have.
GREAT job!
I am in Mexico. It's less than what you have done! Thank you!
Heartwarming Ketra! What an achievement sharing your story!!
Very, very well done!
Thank you, Ketra, for putting this together. ❤
Please if you are going to make a video for ME/CFS do not put music in the background when people are speaking. ME patients are already cognitively stressed - listening to dialog with music is that much more stressful.
Hi there - we have made a version without music so that patients with noise sensitivity can tolerate it better. ruclips.net/video/5bhYYwsD8KU/видео.html
Warm regards Ketra
Sad truth is that unless you'll make into an emotionally charged montage, not many people will give a damn
Thanks Kedra and the team who do so much collaboratively to help
@@MECFSHEALTH Ketra, you rock! Thank you!!!
I am happy to see these findings. Unrest brought me here and my behavioral physiology assignment brought me to Unrest film.
Brilliant! Thank you, Ketra, and all who helped you. This is the best ME/CFS video since Jennifer Brea's TED Talk, which I've shared with so many.
Thank you! :)
Sending you love and light. I’m living the same. 8 years here. X
Brilliant video, Ketra is Inspirational !!
This is the best summary I have seen of the known science and treatment - fantastic! Will be sure to share with friends and family to explain.
Thank you from the U.S. 💕🙏😊
Thank you so much
I have 14 year old. I don't work. Jobcentre say I am fit to work despite years of Fitnotes from GPs saying I am not fit to work. I feel guilty if I can't do housework & push myself to keep up with it.
GREAT job Ketra. x
This is great Ketra. I learnt heaps, its a good summary of some of the latest thoughts about ME/CFS from Australian scientists and medical professionals. I hope our Australian government will realise how important it is that enough funding is given so that ME/CFS can be better understood. I also hope that the outdated medical guidelines that our doctors depend on can be replaced with up to date information. It is very concerning that GET is still being promoted as a treatment when science is showing that this can be detrimental. Patients need adequate support to manage this debilitating illness that causes disability.
Australia's disability service NDIS still upholds the GET prescription. According to them, ME/CFS is treatable and not lifelong. Many seriously debilitated people are therefore left without the support that people with other disabilities are able to receive.
@@rowannehagen875 Hope the updated NICE guidelines that no longer recommend GET will influence Australia to update their guidelines.
They've proven that pacing doesn't work and it has added to the attitude among many healthcare professionals believing that this is a psychiatric illness. It's not, of course.
I wish you the best and hope things improve for you.
S.Justice a dr actually told my sister that if she would get married she’d be cured. She was divorced and raising 2 children when this hit her and the dr actually said it was brought on because she wasn’t married. Yes she needed another person to take care of, and she’d feel all wel
How wonderful to hear a medical team speak sympathetically and knowledgeably about ME/CFS. If only funding bodies were more willing to respond, we might have full understanding and treatment for this condition very soon.
Absolutely - we need funding to figure out the causes and treatments of MECFS. It should be a priority with Covid-19 circling the world and triggering long-covid / MECFS.
Hi Ketra, thanks SO much for this. It is the most helpful thing I've seen online, for what I think I have but of course no one can diagnose me. Off to get a heart rate monitor and have the tests suggested....
Great video, thanks for sharing
Thank you
As a severe sufferer of me/cfs and Fibromyalgia I have decades behind me of being poorly, help none! Every rheumatologist has confirmed I’ve got it, fibromyalgia is getting very severe. Several times diagnosed by neurologist who have agreed & said I’m poorly, very poorly, help none! Visited by health workers, help none because no one recognised how we need help and not classified as mobility and disabling problems, help none! If you look at me I look good lol 😂 but I’m crying inside 🤕😴😓
Qigong and tai chi - both of which can be performed seated - have helped me immensely. The gentleness of the exercise, the 70% rule (only ever do 70% of your maximum in tai chi - if you do 50% you never improve, if you do 100% you can be harmed - so 70% is just right), the flow & calmness of breathing. So helpful!
Another technique which helped me from yoga is to lay on the floor with the legs up on the wall. You can work on stretching hamstrings or have your legs bent. You can play with the curve of lower back with your breath. It's very calming, helps immensely with anxiety.
How I wish that a fraction of cancer research could go to ME/CFS research. I know I have it, and have ever since I caught Mono and Epstein-Barr virus after a friend’s teenage son drank from my can of soda! It got worse after I had COVID 3/20, and even worse after I had a knee replacement in 2021. Thank you to all who strive to help all of us in various stages of this illness.
Thank you for sharing your story! I think it is important to also recognize that some days(some) people with this have energy. But then other days I wake up and I feel like vampires have sucked all my blood out!
I was that way in the beginning. Then the fatigue became permanent. No ups and downs, not relieved by sleep, never changes, always the same. No good days.
19 years for me now. From a successful person, to staring at bedroom walls all day every day, for years.
I think someone knows what causes this, but there's so much money being made on each symptom they won't allow a cure. Heck they wont even tell us why CFS happens- and it's been going on for over 35 years. Karma to them.
#millionsmissing
I have severe ME and Fibromyalgia I lost my job as a prison office and now spend 22-23 hours in bed I am house bound and wheelchair.
Any activity, sound, smell any level of stress mentally or physically, Makes all the symptoms worse.
Can only manage an hour while I am deteriorating during the time
And that everyday.
Everything flares me
The pain, weakness,stiffness,nausea, migraine, disorientate, get worse and the crashes are so severe I get paralysis which makes me feel like I am dying cause Breathing become harder and my body feel like it draining away sinking feeling and then I am bedridden for weeks or months
The sensitivity is horrible,
Vibration and Hypoacusis, my ears.
Everything make me sick
great video - clear explainations, and well done condensing all the info into 25 minutes!
I know I have POTS and exercise intolerance just by living with it for so long....I am happy to hear of these subjective tests so doctors can see for themselves, since objective reports are pretty hard for most doctors to comprehend.....yet, WHAT CAN BE DONE FOR IT? Currently recovering from a fall with concussion, because of the orthostatic intolerance..... CFS/ME is so frustrating.....
Have you had a total body blood volume taken? And are your red blood cells normal and deformable to squeeze through the capilliaries?
I haven’t got a specific diagnosis, but I’ve been diagnosed with orthostatic intolerance. The best thing I’ve found is compression socks- a true blessing. I’m currently working with an exercise physiologist thy specializes in chronic fatigue and similar illnesses (that’s recovered from chronic fatigue herself), I’m also working with a dietician from the same clinic. I was recommended aquaforce and told to add plenty of salt (which I’ve already done for years) and to have a MINIMUM of 3 litres a day. All of this is making me feel a bit better. Hopefully some of this will help you. I know how awful it can be.
I hope we are vindicated someday & receive treatment.
waited patiently near 40 years for help or good news or acceptance. in the U.S. still almost laughed at till covid people now suffering near same symptoms, they are getting clinics and care so maybe those younger will be believed and get help.
Do not give up hope on recovery ever. I am about 92-95 percent recover and back to doing Brazilian jujitsu after 11 months and have a job and in school. Diet, supplements(coq10 is a good one), brain retraining(Gupta program), cold water exposure(cold showers) water and no fap brought me back. I still get occasionally fatigue and have a very small amount of brain fog buts it’s not to the point of deblitation. If I feel a little weird I go lie down and listen to a meditation guidance from Gupta or soul chakra bineral beats for 20-30 min. Makes me feel instantly better
Does adrenal fatigue that’s been diagnosed as extreme constitute these problems? My doc says I have Chronic Fatigue Syndrome, fibromyalgia?
Please please do more research between ME/CFS and mold/ parasite infection. 🎉
Getting up and down from the floor is too much for me. I use my dining room table.
Brilliant video, I've been battling since 1993, and hopeful. Are there more links to keep updated? I'm now basically bedridden 21 of 21hrs, THANK YOU 😊
awful huh? here in the U.S.,nothing, I have had since 1988. best years of life near wasted. did push acomplish alot but always back in bed. now age the enemy waiting for help. the covid people here the haulers getting all the attention with their fatigue even few clinics now for them. all say this sounds like cfs. well sorry for them cause they never helped us here. denied us our drugs that helped pain cause drug addicts were on opiates.,not our problem. we just want a day with less pain. anyhow hope you get help. its a depressing life, I did a support group and I had many men in my support group. all were well b4 cfs. had 440 total members. did for 23 years. did my own research, and CO q10 and NADH do help with energy, supported by study washington university. taking it 20 yrs now, .can buy on amazon. good luck.
I have told my physician I need help. She got a home care company to come to me. Aggravating. They feel I'm capable of outside my home physical therapy. Because I can walk, I can move my arms arms legs for their exercises. But I don't have energy to keep up with my house. No where did they document how messy my house is! Just that I have range of motion better than many they care for. I had to lay down to do their range of motion exercises. I need help taking care of my house! But am not getting it. Because they released me to out of home pt. Unfair.
Well, my dishes are piled, my closet is full of old clothes. My girlfriend has bariatric issues. Just gave me 3 garbage bags of clothes. I just put them on my porch today along with other clothes Ihead piling up in my closet. I can't keep ! I need help keeping my house up. Need help cleaning. Picking up. Cooking. But this therapy didn't help me!
I don't need things! I need energy. Why can't they just admit I need help! I need to pack all the junk piled up all over my house?? Cognitive behavioral therapy is not acceptable!!! I understand I've got am invisible disease. But I really and truly need help m
I need help! How can I Get it! How can they come, and not explain that I don't have energy to do what is acceptable ROM
I don't know which country you're in, but I'd think you letters of support from your doctor and physio detailing the impact the metabolic impairment has on your disease. It's also worth getting a physio therapist onboard your health care team, as they seem to have a deeper understanding, after reading the International Consensus Primer for ME, of how the disease impacts us physically.
It may take time to find the right person. And frustratingly you need help now...but it's worth getting a good physio to help you. And using heart rate based pacing, with a watch - with a visual and audible alarm when you go over your safe threshold can help people understand the invisible energy limitations you're facing.
Some of the best and most up to date information about ME/CFS is now available on the CDC's website: www.cdc.gov/me-cfs/index.html
And also in the International Consensus Primer for ME. www.nhmrc.gov.au/sites/default/files/documents/attachments/ME-International-Consensus-Primer.pdf.
There are also brochures about this video that may help as they include the graph from the CPET testing.
drive.google.com/open?id=1AQCj7L_KH9saR3vd9FN5TbKxnJv6MIPu
excelente documental para hacer visible y el mundo entienda q la fatiga cronica es real no es sicologica
Gracias Zaida.
I live with cfs and it is not fun always in pain always having too much sleep or not enough randy having trouble with remembering where I put stuff or stuff to take with me when I go out like my keys 🔑 I get what she is going through.
Can ME/CFS get better? I asked my doctor if I might have this but he’s never heard of it. I had most of these symptoms from 2016- first 6 months of 2019 but it started getting a little better. 8 different doctors and hundreds of tests later wondering if this could be what I have. But I don’t have the same extreme pain and fatigue as I did two years ago. Is it possible that it gets a little better?
Mine got worse over time. Bedridden now. 19 years
There’s a test now I think. Hopefully they find some drug that will help.
med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html?fbclid=IwAR27_eULomU50bWiVexOB--fnXfk6RdKUKhnPiBub1qvYR7eicpF5k3bHoA
if you got better odds are likely you had something else. unless you are in a remission which can happen. i had off and on intermittent, till got full on,and never got better. we all get it different some have severe or half or some get good and bad days .,no,two get all symptoms the same. or even get all symptoms. am a researcher have medical srudy published on cfs. good luck.
Is there a list of doctors that support Anerobic threshold monitoring? My dr says there isnt medical evidence for it :(
I've found that physiotherapists have more knowledge about this, especially those that are familiar with overtraining syndrome (ie when elite athletes overtrain and cross their anaerobic threshold).
Buenas tardes y bendiciones para todos, me gustaría saver como accede a este tipo de aciestencias y evaluaciones una persona de habla hispana. Tengo muchos años de estar enferma y nunca e encontrado ayuda o respuestas a mi condición; si alguien pode ayudarme a enter como puedo acceder a estos recursos se lo agradeceré.
Hola Sarah,
El CDC tiene bastante buenos recursos sobre ME/CFS en español que le ayudaría. También podría ser beneficial hacer La Nasa Lean test en casa y llevar los resultados al médico para mostrarle del POTS, asique este es una de las síntomias diagnosticas de ME/CFS según la información del CDC.
www.cdc.gov/me-cfs/es/index.html
rarediseases.info.nih.gov/espanol/13205/sindrome-de-taquicardia-postural-ortostatica
I'm a teen... I started having cfs when I was in 7th grade my grades started to go down from then and it's still continuing 😭😔😢
Savella and LDN have helped me
@@KidCity1985 what's that?
Have you got a heart rate monitor ?
@@reothomas7624 LDN - low dose naltrexone. Researchers at the NCNED (featured in this video) have just released a paper about how it helps natural killer cell function in ME/CFS patients. It's not a cure though.
@@ketw3517 thanks but i found that my vitamin D3 level was so low and that caused the issues... I had 6.7 in my body whereas a normal healthy person has 20 - 30
What are those of us who are severe a very severe supposed to do we can't do any of these things???
The PEM I will get just from thinking, listening, leaving these few comments will be horrible. But I'm trying to understand what is to happen to those of us who have no carers
We appreciate the effort it takes to watch and leave a comment. The lack of care for people with severe MECFS is horrendous. Hopefully this video can help loved ones and health professionals understand. You may find the low-sensory version without music a little easier to tolerate. ruclips.net/video/5bhYYwsD8KU/видео.html. xo
Does anyone in Australia know if medical heart rate monitoring equipment is subsidised/paid for under Medicare?
PaperCup I don't believe it is, as the heart rate monitoring equipment is advertised here for fitness not medical use. I'd recommend checking out ebay for economically priced chest straps and second hand watches. (Polar, Garmin and mioalpha are all reputable brands.)
@@ketw3517 Thanks very much Ketra for the suggestion and recommendations. I'm a bit of a technophobe/ illiterate and ME brain makes it even harder to work all this stuff out!
By 'watches' do you mean things like fitbits? Is that what one needs, to record/analyse the data from the chest band? Are the names you mention for the watches or the straps or both?
I thought I read somewhere you can also use a smartphone somehow for the analysis part - but of course, I don't have one them either... but at least if I got one, I could potentially use it for other useful things at some point. Not sure I'd use a fitbit for anything else...
PaperCup I wouldn't recommend fitbit as a brand but yes a watch or a chest strap paired with a smartphone is what most people use. There is more information and Facebook groups listed in the 'resources' folder in the description of this video. 'Getting started with Heart rate pacing' has all the info you need to kick off. 😊
@@ketw3517 Thanks again - so it looks as if I have to buy a smartphone and a chest strap. And then learn how to use the smartphone and maybe add an app or something for this ?
Have found the folder and bookmarked it it for when (if) my brain can handle it better.
The Emerge explanation was good - managed to read/ comprehend most of it, I think, but got confused at the end, and didn't see anything re nuts and bolts of using phone/app.
I expect most younger people know how to do this sort of stuff, unfortunately I don't, and get v confused with it.
In the facebook group MECFS: Under the threshold, there are files which tell you how to set them up. Getting confused by it all is pretty common. I'd go into that group and have a poke around in the *files section* to see what info is there and what would suit you before buying anything. You can also start with a watch and a computer - or a watch and an app. xoxo @@papercup2517
Está el video traducido en español o subtitulado? Gracias
si, hay subtitulos en espanol. Un amigo gracidamente los hizo. Para encontrarlos es necesario ir al engranaje de configuración (que esta al lado de CC, al derecho abajo del video) y elijir
Some good advice when going to any doctor; ALWAYS TAKE SOMEONE WITH YOU. IF YOU'RE A WOMAN, TAKE A MAN WITH YOU. IF YOU'RE A MAN, TAKE A MAN WITH YOU. PREFERABLY A WELL DRESSED MAN. JUST HAVE HIM GO IN WITH YOU AND THE DOCTOR, SIT AND BE QUIET. JUST OBSERVE. THIS MADE ALL THE DIFFERENCE FOR ME WHEN TALKING TO ANY PHYSICIAN. THE DOCTOR WILL TAKE YOU MORE SERIOUSLY. ALSO, WRITE ALL SYMPTOMS DOWN, READ THEM TO THE DOCTOR. WRITE ANY QUESTIONS DOWN. I would like to thank you Ketra and all who contributed for this film. THE MEDICAL WORLD NEEDS TO WAKE UP TO THIS UNKNOWN ILLNESS AND BE MORE COMPASSIONATE !!!!
Yes, I agree with this advice. Often the clueless male friend is taken more seriously than I am. I'm glad to have better doctors now.
Thanks, we need lots more video testimonials since nobody believes our stories. Lovely film, but those sounds are like nails on a chalkboard, it is as sensitive an issue for some as chemicals, vibration, smells, sounds esp high pitches..maybe worth doing a version w/o? thanks for this new film! Was in Oz for Y2K and planned to go back but got this instead..
There is a version without sound in the video description. 😊
Severely affected ME/CFS patients suffer from noise sensitivity and struggle to listen to speech, especially with background music. For them there is a low sensory version of After Unrest without music: ruclips.net/video/5bhYYwsD8KU/видео.html.
#MillionsMissing
God has made hell on earth real
Anoir Ben God does everything everything for his own glory. He is a loving kind Father and has a purpose for all he is doing has done and his wii be done. I love you Anoir
@@dianestewart5649 bullshit
What happens when you are exposed to light and sound? Pain?
Yes
Think full body migraine - it can be instant or delayed.
Exercise is mentioned a bit too much ! Haven't they learned ?
Ms Tea I totally agree with you.
Please, that music was extremely painful. We sufferers cannot listen to that, it brings excruciating pain, it's one of the main symptoms. I'm sure it was not intentional, but a good illustration of just how little the public knows about this serious problem. If you don't have it, you cannot possibly understand, but when a victim tells you that noise is painful, they REALLY mean it. Believe everything a victim tells you, they have no reason to lie.
Hi - I do understand that music really hurts (it was incredibly painful for me to edit and create this version for educating unaffected people) - and that's why I made a music free version as well: ruclips.net/video/5bhYYwsD8KU/видео.html . I'd love to hear if that's more tolerable for you.
Has there been 1 documented case of this in a third world country?
Google India+ME/CFS. It's common there, but diagnosed even less than in the West.
whats with the music I can not hear what the woman is saying, anyone else experience this?
Hi Brian,
I've created a version without music, which you might find easier to listen to: ruclips.net/video/5bhYYwsD8KU/видео.html. You may also find the closed captions, edited by one of our volunteers, helpful.
All the best,
Ketra
Brian Medium ... I am listening with headphones and can hear them speak
Yeah please, everybody is putting music on their video cannot take it.
The Low Sensory Version of After Unrest doesn't have music: ruclips.net/video/5bhYYwsD8KU/видео.html
She seems like an mcas patient and pots probably irlens too . She needs h1 and h2 blockers ,electrolytes. And fluids ,tinted glasses and screens , and to be given the right dietary support. She probably needs iv vitamins too
100% on board already with all your suggestions here. :) All worth investigating and trying for new patients.
There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information.
I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there .
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
What a depressing documentary! Not exactly what helps you to get better...
Doctors are not gods!
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins.
The first consequences were: pain in the neck, fatigue, sore throat, depression, .....
After 3 months without a microwave oven these symptoms disappeared.
Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example.
If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study!
People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation.
I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
Question and don’t be mad I’m asking “asshole” questions and I’m on this video to learn. Ok here’s my frustration. It literally seems like people with this disease have every symptom of every disease that ever existed...I’m tired, head hurts and I’m burning and if I do anything when I’m tired ummm I might never recover and lights bother me and sound bothers me and I don’t sleep well and I hurt and i feel mentally very similar to people who experienced loss of child and my throat hurts and nobody is ever allowed to push me to except use cause I’m a pro and even though nobody ever I’m history studied it I decided exercise over long term ummmm well no chance it will works and I won’t try water excersising and I’m positive long term pushing myself will kill me stupid and I may not get that energy back so unless u give me meds u can’t make me DO anything and ur silly to even ask me....heart rate......honestly if it’s all that and u cannot help yourself them this generation will have to except it....it’s a stubborn group who studies there’s own disease so much cause nobody else does so u can’t tell them anything and they are listening to advice from (remember) a person with such symptoms I can’t fucking take there medical advice....impossible to help them so that I honestly think hurts them indirectly ....it’s a dick thing to say but speaking to anyone with this is the worst convo. They won’t do shit so why talk. Meds is all they will do
Hi Michael,
Thank you for speaking your mind. I'm sure many people don't understand the disabling nature of the disease and have similar questions. Aerobic exercise intolerance is a measurable, quantifiable, unfakeable and unique part of this complex multi-systemic disabling condition. It's important that people know that aerobic exercise *does* make people with ME/CFS sicker as pushing people with ME/CFS can cause irreversible deterioration. As shown in the video, pre-aerobic anaerobic exercise can be used to help ME/CFS minimise deconditioning and build strength.
If you're interested in learning more about how exercise intolerance is measured, the Workwell Institue has a great webpage on testing for disability. workwellfoundation.org/testing-for-disability/ .
Question for you: where in the video did you see any medication recommendations? It's been a while since I created the video, however, I don't recall recommending any medications. Many people with ME/CFS, experience chemical sensitivities which makes it difficult to take medications to even ease symptoms, and as yet there are no medications recommended to treat it.
Do you have any further questions?
Meds are not mentioned in the video. You describe the symptoms and the frustration and overall helplessness that can be caused by the disability well. However, this seems to make you angry at the persons rather than the disability and their limitations.
How horrible! Let allone when you don't have any help, and think about the future....
Do not give up hope on recovery ever. I am about 92-95 percent recover and back to doing Brazilian jujitsu after 11 months and have a job and in school. Diet, supplements(coq10 is a good one), brain retraining(Gupta program), cold water exposure(cold showers) water and no fap brought me back. I still get occasionally fatigue and have a very small amount of brain fog buts it’s not to the point of deblitation. If I feel a little weird I go lie down and listen to a meditation guidance from Gupta or soul chakra bineral beats for 20-30 min. Makes me feel instantly better