Severe and Very Severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) 

In memory of my mother who passed away misunderstood and not believed by family, friends, and medical providers. I love you mom and miss you! I believed you from Day One!

24 years now with this monstrous illness ... house bound and bedbound , my love , understanding and gentle hugs go out to all who are suffering , and love and thanks to all the carers , families , friends and doctors who have been working tirelessly to support and find answers , i commend you all ...it is so very hard when some of us have no help and no family or friends to be there for us ...the nightmare continues ....from Kat in Australia ..... UP date 26 years now and much , much worse .. still no help , we are just ghosts living in darkened rooms , and forgotten , i pray every day for help if not for us who are much older but for the youth , it is true we are the forgotten and i know there is much more to this nightmare than meets the eye ... love and gentle hugs to all who are suffering , bless xoxoxo

Here because of Physics Girl. I had no idea there were so many people who had been dealing with ME/CFS for so long, and I'm disgusted by the amount of comments I've read here from people disregarding the condition

41 Years, ME/ CFS/ FM. My life was stolen when I was only 20 years old, I'm now 61. How I miss my life. My love and strength goes out to all my fellow patients who suffer such a debilitating mysterious illness. May science please find us that cure. Please hang on and have hope although even I feel this is wishful thinking. Thank you for reading my post. Blessings from Toronto, Ontario, Canada. Iam David.

35 years here; family thinks vitamins and exercise will fix me right up. And pain is the number one symptom. No help, no hope. But I will not quit.

As someone who developed this disease over 20 years ago after contracting mono from a relative, I can safely say that it is like you're living hell on earth. It is often misunderstood and dismissed. We are some of the strongest people I know; the average person could not dream of functioning with this horrific disease.

This disease has literally ruined me. 20 years now, and I still grieve the capable person I used to be. Now I have Rheumatoid Arthutis also, and I cannot believe I could feel even more exhausted. These two diseases together feel like an impossible existance.

I wish all the sceptical doctors and members of the public would consent to see this truthful and compassionate video.

This was such an accurate video (very rare). I've had M.E for over 25 years, was house bound for first 10. Managed to do a part time job for 8 but got too much. Now have COPD added in for good measure! When M.E bad my breathing goes rapidly down hill. My lung specialist sees no connection but i do. My GP doesnt even acknowledge it. Thank feck, i have learnt to managed it (sort of). My heart goes out to anyone suffering with M.E. especially the young and hope you get a better life soon.

77 years old now. ME/CFS about 20 years. 2 years ago I moved into a senior apartment that provides meals, housekeeping support and social support. I am very fortunate. But most of my time is spent on my bed with my sweet dog at my side. At times I have felt like, how can anyone be this tired and not die from it. But I also have some good hours when I can function a bit. Prayers for you all who suffer. ❤

My close ME/CFS friend in US finally just stopped eating knowing it would kill her. She couldn’t take the pain and fatigue anymore and the complete abandonment of husband and family, dwindling resources. She was a Clinical Psychologist.. Believe me, she had tried everything for over 20 years and saw every known name physician in this field.

That last statement "no help is better than help that harms" is definitely true. One of the gps i went to had no idea what to do to help and yet they managed to convince me to try anti depressants. I now know this is just the standard bs practice doctors seem to be using to fob people off when they cant help. But i tried to stick to it for 6 months. Absolute nightmare, i got every single side effect. How they are supposed to make people feel less depressed i have no idea i wasnt even depressed, before i started taking them but when you've got uncontrollable gurning, teeth clenching, constant 24/7 major heart burn, invasive thoughts, invasive suicidal thoughts, lose the ability to feel emotion, random anxiety attacks over absolutely nothing. and many other side effects. How that can make people less depressed i have no idea. Calling them anti depressants is a lie. They are emotion surpressants, prescribed to try get patients to feel nothing and stop coming back to the gp. Yeah, i dont trust doctors any more. They cant help.

I need a CSF/Me support group. I'm tired of people talking to me like I'm some sort of Hysteria that I need to get over. It's very lonely.

"No help is better than help that harms" there at 8:18, talk about heartbreaking.

It took years to eventually be diagnosed. I was so sick, that at it's worst I was in bed constantly and eating just toast. My weight plummeted and I was vomiting. ONce diagnosed there was little help. Just a chat with someone who talked about pacing repeatedly. (pacing does work). The thing that saved me was chocolate. I felt sooooo sick. But force fed myself 2 pieces. I felt better. I am still very bad and declining. I am fearful of covid as it has not gone away and any illness makes me very bad. The vaccine made me draedfully ill for 6 months. So I have only had one dose. Basically now. I live in complete solitude. Never see a doctor. Never see a dentist. I am rotting away and my weight is drpping again. I'm preparing for my death. My heart is still struggling. (vaccine started this) I cry all the time. I eat plain foods and the same food every day. I survive on delivery services. I wake up aching as I find the bed is uncomfortable. Even tough I sleep on ten inches of memory foam on top of a good normal mattress. I have nightmares every night. I wear the same clothes for weeks. Just changing underwear. Basically this end life is torture and all alone. Before this started I was working full time and played live music in 3 bands. I'm a coward. I can't end it either. My doctor knows how ill I am. She is so short of time and cannot help. I take so many pills. I think I would rattle if you shook me. I used to love people and was very sociable. This world has changed too. They have been replaced by monsters who think I should just get on with the dying part. Sorry...I started typing and it all spilled out.

I don't understand why the cause isn't known by now. I want my life back.

I suffer severely... not only physically, especially mentally, I am alone in the world, I have no family, no friends... no one, no one... I can move worse and worse. Socially isolated and lonely. Can't sleep anymore mad soon... Had only experienced violence and torment since childhood. now I'm creeping along, agony of death deadly, pure torture. Everyone may understand me,, doesn't it? And outside are the lucky ones. I'm infinitely sad and desperate... Thank you and best wishes Ruth

I'm a severe case. I know I'm not very severe because light and sound doesn't bother me. I send almost all day in bed and depend on my family to help me. I feel like this is the closest you can come to feeling like death

I was diagnosed with ME in 2012, when I was about 12 years old. I had experienced illness from the age of 8 following trauma nobody knew about (including myself) from SA. I absolutely loved school. My best friend was there, I loved learning too. But I just couldn’t get up many days. My mum was bullied by doctors into forcing me to go which would just set me back more. My mum believed in my pain, but was accused of being the cause of it psychologically. When I was 11 it became severe. I had started to remember my traumas from childhood and this is likely the cause, but it got worse still when I had dose one of the HPV vaccine given in schools. I could rarely get out of bed or talk or open my eyes, and I remember my mum opening the windows to show me the snow, and suddenly she was showing me the summer sunshine. My secondary school repeatedly threatened to send the police to our house. They did not send me learning resources to do school at home. They did not even believe me. When I could, I did part time school. My mum would drive me in after lunch for the last few hours of the day. I was often greeted by my teachers saying “Amy is back from her schiveritis”. My mum could not work as she was caring for me full time and she had absolutely no support, there were discussions about munchausen by proxy. I too started to doubt that my illness was real and was worried that my paracetamol was drugs to make me ill. I was always getting infections that didn’t clear up, especially UTIs as I was often too weak to sip water and had to be carried or wheeled on my dads office chair to get to the bathroom. The office chair became a significant part of getting around the house, but even then it was often too much to be around light or to be sitting up. I remember attending a meeting at school where my dad got extremely angry at my school and they reluctantly agreed I could take my GCSE exams on separate days in a small darker room by myself. They kept reminding me that students with under 90% class attendance don’t get a single A-C grade and will not go anywhere in life. I had 28% attendance yet managed to get two A*s, 2 B’s a C, and an E thanks to the few teachers who really did understand and would help me online outside of their working hours and encourage me to just do my best and not worry. I couldn’t manage the rest of my exams, and did 6 instead of 11/12. College was more manageable but one of my teachers was constantly mocking and disbelieving me. I also had a new similar trauma from age 15, as the one summer I managed to get out of the house a bit more, something happened to me at a friends house. I was also dealing with a court case against this friend. My dad set up a meeting with the teacher and forced him to read an ME for teachers guide page by page with us in the room and had to threaten his job. Even so, I had court in June and also my deadlines. There were two final deadlines. As I submitted most of my work for the second of the two, it was capped at a pass grade. Even though I was told it was deserving of a distinction. I managed to get many university offers as the second year I did almost all of my college work from my bed and got almost all distinctions. The body rest helped my severe ME become moderate and I become more independent. At some stage I had a part time job at Tesco. But instead of working on the tills, they gave me the role in clothing and made me carry heavy rails with broken wheels of boots and winter coats across the superstore. I was told off for sitting down when I nearly fainted. I was fired for not being able to attend three consecutive shifts, and missed college for a month or two. I had to drop out of university after two months and had another severe relapse which then lasted about 18 months. I couldn’t find a job. I was told working from home was a privilege that only senior employees who have proven themselves had access to. I found some part time freelance work that I could do from home but if I was too unwell to do even this, i was deemed unreliable and would be sacked. Then the pandemic happened. Even during lockdown when the government told us to work from home, I was fired from a job for not attending the office more than twice a week and then having a relapse where i worked from home for two weeks following pneumonia and another police case from staff at my cousins wedding. However, I now have a job I absolutely love, and I’m doing really well. Working from bed almost all of the time is normalised and understood. My managers wife also has ME, and his only concern is that I am doing the best to care for my health and not make myself worse, and he doesn’t put any pressure on me for deadlines or office attendance. Due to this support my ME is usually moderate, and sometimes mild. It fluctuates a lot but I actually feel like I am alive for the first time since I was a child. Stories like mine show how much of a difference the understanding of others can make to sufferers of this condition. So if you are here because you have been doubtful of someone, give them the benefit of your doubt. Give them support, and although it won’t make them better, it will better their quality of life. I went from being close to death many times from malnutrition, dehydration and infections to even being able to attend music festivals and go camping as long as I make use of the disabled facilities and remain sedentary before and after. Living with ME is life breaking, but good people living alongside me is life changing. ❤

Brilliant work Adam. I am thinking of all the people with severe ME today, and of all the carers. I believe we will come through this extraordinary public health injustice. But what we will never get back are the decades needlessly lost.

Wow, hard watch...thank you so much for the effort you've put into making this video. 💙 Bit of a shock to see myself. It's hard losing the life you had...and harder still that you are then disbelieved 😔

Thank you for making & posting this. I’ve had this condition for over 35yrs & I haven’t seen a doctor who understands my condition for over 20yrs. I was lucky to have good doctors at the beginning of my illness but after they retired nobody in my area of Australia has taken the time to learn about ME/CFS. So many of us are alone with no one to care for us at all, some are fortunate to have friends or family to help them, but many of us long sufferers have nobody as friends & family move on with their lives after awhile.

The lack of understanding around CFS/ME, even from close friends and family, makes this condition even harder than it already is; and then add GP’s etc in to that mix = devastating. I’m luckier than most as I’m lower end of spectrum, and have an amazing life (I choose to see it that way), but it’s still utterly crap and some days I’m really not sure how much more I can take, and beg for respite. But another day comes and I do. Maybe it works against me that I look well 😂❤

I've had ME/CFS for 23 years, and also make videos. I really, really appreciate all your work in producing these!

Brutal illness

Videos like this are so necessary and needed. Compounding the tragedy of this profoundly disabling illness is the significant lack of care, support and consideration given by both DWP and the medical establishment. 💔

Wow! I'm not alone. I just had a call from GP that reduced me to tears of frustration and anger in the medical incompetence surrounding M. E. and this GP is head of practice. Thank you Broken Battery for the comfort that some awareness of what this disorder does to people. I hate societies stop feeling sorry for yourself, get on with it, you're just tired, faking for benefits and total lack of understanding attitude. We need to be seen, heard, understood, treated with compassion and treated by the medical profession for our symptoms. Sorry rant! Feel better now. Time for a rest 🛏️

Thank you for making this video, I have been suffering this illness since September 2005 bedbound for approximately 4 months during the first few months of this illness , thankfully I am only Mild , Yet Mild to a healthy person seems extreme when you have to use a walking stick at times, due to your legs collapsing under you, If only people new just how dangerous and extreme this disease really is, yet I look a picture of health, if only they knew the turmoil going on inside the body, used to run 100 metre sprints in 11.4 seconds , now at times can barely walk inside my house without careful consideration, as to where I place my feet, this fatigue is insane

Thank you so much for making this, I really do hope it's seen by as many people as possible.

10 years for me sending you all love. I live alone and don't have family supporting me. It sucks. I'd like to experience love from another too...

Excellent if sobering film Adam. I can imagine the effort that went in. The lack of research, practice of harmful treatments and abandonment of these patients is a medical scandal worse than Wakefield/MMR. I hope in time an enquiry will lead to justice.

Dr Ron Davis hits the nail on the head. I was unable to function as a human being better than my friend who had 4 days to live. His had cancer Je was in difficulty for two months. I was like this and worse for many many years. There are many issues that need to be addressed that are not addressed. The worst being that because of the incompetence of both the WHO NICE and the NHS sufferers gave their suffering made a thousand times worse, if that were ever possible. .Those charities that have anyone from any of theses quarters need closing down so CS on here I consider to be one in question. The most amazing fact of this none-ensical medical gibberish is the complete and utter obvious oblivion to the Cause. Terms like CFS simply shouldnt be used. Its diabolical both in its dilution . It also fits with the assumption that its mental health. The main issues are the total lack of comprehension of the core illness and its implications The wrongful and idoitic assumptions which incidently vary from one idiot to the next within any system of so called medical environment. Every symptom has an obvious causation. Every time I see that there is no comprehension of the body and how it operates under invasion of a virus/bacterial (man made ) It makes me wonder just what is it that these idiots dont get. As its all part of an auto immune infection. The fact that GPs and the like are convinced of the imaginary nature of the illness means that more and more people are misdiagnosed under the umbrella of ignorance which I call BGS Bad guess syndrome. That then dilutes the real illness which is horrendous. I can go on all day all night for weeks on this subject. I was unfortunate to suffer for around 17 years. I am convinced that once the desease is embedded it is not going away. Thus at 12 tears I made steps to correct what was wrong. It took me 3 years to invoke corrective treatment that would dissolve some of the symptoms. It took another 2 to see that unless intervention was done in a pragmatic tier system. That what I had collated would not work as an end game solution. It is very difficult to explain to anyone with M.E what they can do and how they can help themselves (where possible`), The usual blood poisoning by the wrong gasses in the blood means that the thinking capacity of the subject is at best bad. The illness requires auto immune treatment. And sufferers should have 24 hr care. If you have standard encephalitis. You are treated this way and as a human being. Using the interferon of rituximab or similar...which was also the Norwegians choice of drug. However as in my own discovery you soon realise that the body is far too weak for this approach. Thus the body has to have its immune system improved. The only way that can be done is if the person in question has help.....otherwise it takes fucking years. As I found out myself. On the basis of the original source....(never told as very few understand its origin)...the lies.... the reason it has a medical definition which is totally and utterly ignored. That cause was thru Gov intervention..what else lol. Which re defined it and has gone on ever sincethru WHOs 100% stupidity. The good news is that there is a road to recovery for folk that have this illness. The bad news is it takes a blooming while. And Norrmal Homeostasis is recovered in the most part. The reason that most drugs dont work is the same reason for evrything else. Not treating this illness as an auto immune illness....requiring anti inflammatories to stop pain. not pain killers which is positively mental. I went au natural as an infected hyperthalamus already in a state of chaos does not like further chaos introduced by way of chemical cack. Right Im going to stop there as I have the bailty to go on ad infiinitum. I am typing in the dark and I need a wee.

Just was diagnosed with ME/CFS last week. Finally have an answer to why I can't function. I see these very severe cases and worry that this is my future. Thank you for putting this out there. I'm gonna try to spread this video around.

Thankyou for stating that many people with cf and pain are way worse than many with multiple sclerosis. I have a genetic condition which is thought to cause all my symptoms. As terrible as it sounds i have listened to people talk about their ms and thought to myself its not even a tiny fraction of what i live with.😢and i can get out of bed and walk and eat and drive a car ( often in tremendous, mind boggling pain). My heart goes out to those who have no answer as to why ...

Diagnosed with cfs before it had the title me attached to it. Not severe like these poor people. Not bed-bound but house-bound. Also have fibromyalgia and a host of other things. I guess I should be thankful. Some days I just want to die. I’ve tried to before. May do it eventually. I just keep praying for the will to keep going.

Thank you so much for this. This is a very good, informative video. Greetings from 🇫🇮 Finland! I’m a severe - ME - patient here.

This sounds awful, I feel sad for people who suffer with this. God bless you 🙏 ❤

Do not forget emotional exertion. Physical, mental and emotional exertion.. no one knows when that point has been reached, as it constantly varies . Also its not just days, weeks, months it's also years, if at all to recover from a crash& you don't get back to stage at before. Each time you limits are less& more fragile& quicker to crash& longer the crash. The body has less blood, every element is under severe attack& effectively dying. To many are diagnosed with CF which is not the same thing, main difference, you recover from CF.

Even in not quite so severe ME/CFS that bit about mental exertion can be a very frustrating thing, allow me a moment to give an illustrative anecdote; _"Seriously!? All I did was work on a model airplane for 20 minutes and now my brain is too tired to read anything in a freaking paperback Star Trek novel? Oh come on, paperback novels ain't exactly written at the PhD reading comprehension level!"_

Wow, didn't know it could get that bad. Feeling like the Tin Man, stiff and sore, and slowly creeping around with next to no productivity lasting for months after stressful occurrences has been my life for 35 years. I see I'm one of the lucky ones.

sounds like an absolute nightmare for both the patient and the person taking care of them. i hope no one has to suffer from this and for those who are already recover ASAP 😢😢

44+ yrs of cfs/me. I’m caring for my very ill relative at the moment and have been for weeks. I’m swimming through a mire of exhaustion, pain & so much more but I can’t stop or they will suffer far more. It’s a nightmare but my mantra at such times is NEVER GIVE UP OR GIVE IN TO IT. At least not yet. To everyone who suffers with this acute and chronic disease, my love, my strength, my heart and soul is with you. I love you and I’m here to listen and offer a shoulder. After 44 years I can only say, keep hydrated, make lunchboxes to take to bed, give time time , nurture yourself, pace housework etc and enjoy those rare moments when your body works. I love you 😘

Great highlight. 5 years of total struggle with zero interest from GP or referred specialists. Had to work it out myself and seek treatment abroad under own funding despite NHS and private care. Have immense empathy for those struggling or unaware what’s wrong… it’s deep suffering each day at some point. Awareness must be increased, ignorance is not an excuse when suffering is so great.. Drs must become more accountable to their patients and less so their masters 🙏🙏

Very accurate, and 'to the point' video. It is such a dreadfully misunderstood syndrome.

Hi This is interesting. Doctors believe us. I was diagnosed with cfs and fibro about 8 years ago but think I have had it for years. Everything discussed, I can relate to lack of sleep, nausea, dizzy, sound, and light sensitivity, agonising pain in joints and muscles. Poor sleep, b12 deficiency, depression, thyroid problems, poor memory, restless legs, clumsy, iron deficiencies, can sleep 18 hours a day. Some days in bed all day. Never feel refreshed..... the list goes on. I am shocked. Doctors still think it's psychosomatic. More funding needs to be given for research, which is debilitating and destroys lives.

I have always been weak since I graduted college. I dont like light, introvert, dont like interacting with people, loud noise bothered me, I dont like to talk longer than 20 sentences a day. I get tired easily even after eating or cleaning. This fatigue affects my job. I am not severe but I know I have been stuggling. I hope everyone can get trough this. We all on this together.

35 years living with ME listening to this made me cry. I can relate to so much of it, it’s so misunderstood by a lot of people. I don’t tell anyone anymore that I have chronic fatigue because of the times I have heard well get tired - I silently think to myself you have no idea. Thank you for this video and sending love to anyone else suffering.

I’ve had Covid several times. The first and third time very bad. Then in 2022 a bad Bells Palsy episode. I’m still dealing with that mess. On top of cervical stenosis, high blood pressure, type 2 diabetic, osteoarthritis. The list goes on, I’m only 53 yrs old. I used to be very active before Covid, I would walk my dog all over town, push mow my yard, go hunting with my husband. Now I just crave sleep/rest. I also have nodules on my thyroid. I lost my health coverage in April. I take meds for anxiety, and now I’m stressed and depressed because I’m not able to afford the injections I need for my back pain.

Thank you for making this video

We are the “invisible” people. I’ve started having food intolerance in the last year. I’m not looking forward to the next year. I know my body can’t go on with this terrible illness, especially when food becomes a problem. Perhaps I will simply die due to malnutrition…? Probably the only way to stop feeling these horrible symptoms.💔

Thank you for all your effort to make this. It is very educative and I will share it with my caretakers and my GP (hopefully he will watch!)

Thank you for this Adam, I recognise a few of our friends in the video.

Such a good video Adam! I will be sharing this X

Moderate/Severe here. Keep fighting.

This is the first ME video I've seen, that explains perfectly the way it FEELS to have ME. The loneliness, stopping doctor visits, isolating ourselves because it's easier to deal with life, the heartbreak of losing things year after year, until there's very little left of the world you used to enjoy.

this is a great video. You have gathered information from credible sources to make each distinct point. This is excellent. well done.

Thank you for this channel. I am trying to show these video's to many health professionals and especially the NHS. It's falling on deaf ears but some are getting the message. I cannot tell you what I am going through. But thank you.

Thank you for another amazing video

Just came across this video and thus this channel. And I am so glad it did. It is so validating to see a video telling everything I wish people.would understand. And it was the same for me too. Doctors misguided me to do graded excerise and I have not been the same since.

14 years I’ve had this monkey on my back. At first it was weeks in bed that I don’t remember being alive. I do know that my ex husband was coming over daily to help me. He even got me in the shower one day. He would bring food and try to get me to eat. I lost 29 pounds in 3 1/2 weeks. I had also been diagnosed with fibromyalgia so that was a double whammy. Since then I’ve been trying to get some motivation and trying to get my life back. I’m working from home now but just the time and energy I need to be up and doing my job for 8 hours puts a huge strain on me. I usually will come in and collapse in the bed after my shift. Sometimes I have to just lay down during my lunch break to “charge my batteries” to make it through the rest of the day. Weekends are for rest. I don’t plan on doing anything and I usually stay home and in the bed. I wish more people would understand this condition. It would be so much easier if folks could just realize that people with ME/CFS aren’t being lazy. They/we are trapped inside a body that is sick and refuses to get well.

One of the best videos I have seen on the subject, had it for 20 years on and off, moderately, some house and bed bound, The solution is to stop the push and crash cycle, stabilise, the very slowly increase activity, more is less at the beginning

My mecfs is in the moderate category and as much as it frustrates the hell out of me I see severe cases and am reminded to be grateful for the little bits I am capable of. I just wish I was able to do more for my kids though :(

Just a few weeks ago my partner's new primary care physician recommended that he "exercise more" as a result of his unexplained fatigue and other ME symptoms. Here it is 2021 and doctors are still giving advice that would likely bring about more harm than good. Just image what long-Covid patients are going through today. Doctors need to be FAR better trained and educated on ME and similar illnesses.

3:50 I follow Whitney's blog. He can have conversations now, write for an hour or two each day, and listen to music.

I feel so helpless and hopeless some days. I have ME/CFS, Fibromyalgia, Functional Neurological Disorder and Pemphigus. Alongside Endometriosis. My life is constant pain and fatigue and feeling useless and worthless and wishing I could do more. Most days are bed days and I often feel as though I’m existing in this world, not living in it. Sometimes I wish I had an illness that was more easily treated and understood by medical professionals, instead of these illnesses that are scoughed at and called fake and dismissed. It’s been a living hell for the past 15 years and I struggle every day. I get so fed up of telling people I feel like crap when they ask me how i’m doing. So I just lie and say I’m finee. I mean I look fine, so why on earth would I not be? That’s the worst thing, looking well but feeling so so rotten. Sorry for the essay but I started venting and couldn’t stop.

I'm so very greatful that I have only a mild case. I can get up and take care of my animals (most of the time). But after that my energy is spent. I can’t take a shower alone or standing most of the times, I can’t take care of my household, laundry or cooking. I'm 37 and I have a shower chair, my mother has to do my laundry again and prepares meals for me. I got this after a medical procedure which was neccesary for me because I worked in the medical field. It's still hard to imagine that 2 1/2 years ago I was managing a little laboratory for thyriod parameters and now I have only my best friends visiting because I'm ashamed I didn't vacuum my rooms for months because I lack the strengh... I'm not very surprised that doctors will not believe me, because then I'm freshly showered, on time and alert (if not I'm just dirty and lazy), even if I tell them that it will take me the next days up to a week recovering from the appointment... With careful pacement I've managed to avoid a full crash for months now. (YAY!) But I fear the healthcare system will put me into another course of therapys and treatments soon, undoing all I have achieved. It's shocking how even such severe symptomes as shown here are ignored and patients harrassed that are fighting for their lives! My heart goes out for all of you and your loved ones who believe (in) you❤❤

This is hectic. It is so sad. My thoughts and prayers goes out to all suffering right now.

Thankfully I'm not completely bed bound although I've been suffering with all these symptoms for most of my life. As I get older the crashes seems come sooner and last longer. I've now been off work for the past 7 months trying to heal but because we didn't know what the problem was how could I find a solution. There are days though where I just cannot get out of bed. Where a walk o the bathroom and bathing is too much. But I'm grateful that I'm still able to get up. At least I know if not in my country. There are Dr's in other countries who are trying out there. So I decided for myself to look for solutions through RU-vid to find platforms like this. For guidance.

I was 28. Now 70. Friends and family abandoned me long ago. Circumstances force me to over-exert on a frequent basis. I’m in an almost perpetual crash, and it’s killing me. Literally. Gave up long ago seeking medical help for ME; now it’s strictly things like infections or supposedly unrelated health events (when I can drag myself to the doctor’s office). A recent - thankfully mild- heart attack put me through hell with tests, endless questions about everything except the obvious, and *judgement* about my “lifestyle” - as in I should “eat healthy” (how do I do that on old age pension and too weak to cook?) and get more exercise. I’m to the point where I can barely speak. What’s the point? 😔

Much love to those afflicted

Great video, hoping to send to family members... 😬

Respect please. My comment has been removed. I put it back. I cried so much watching all these people in the video. I myself have been affected since 1997. And I was severely bedridden for at least 15 years. Today I am better but I am still very fragile to stress. Thanks to everyone who participated in this video. Big thank you! (traduction google)

Very very sad. It’s criminal that this has gone on for decades. And at what cost does lack of investigation for a cure cause this county in lost taxes from careers that have been abandoned. Do better NHS.

I'm in UK, I know M.E to well. I completely shield, I care, but have also lot free time.. If I can help anyone with M.E that is struggling I will. Please do not struggle or feel alone. You aren't forgotten by other M.E victims..xx

I have clinical depression. I too am tired, but at least I have stimulant medications that can get me through the day. I also have the hope that my brain matures out of it by age 25. I pray I never have to deal with this horrible monster because I cannot stand the feeling of fatigue and weakness. Absolutely horrible what you all go through.

If you have a diagnosis of myalgic encephalomyelitis, always look for the underlying disease. Lyme disease is very often the cause. The symptoms are similar. I had this diagnosis (CFS/EM) 15 years ago and eventually found out that I actually had Lyme disease and other tick-borne infections transmited by one tick I hadn't seen. This is one of the main causes (not the only one, but the most important to look into). However, be aware that Lyme disease tests are not very reliable. Lyme disease specialists first check for symptoms (some symptoms are particularly typical) and do a blood test as well, but only at the best labs for testing for this disease (Igenex in the US).

A bit of a tangent, love the decoration on that gal's cup/mug at 2:48. :)

Thank you so much.Excellent video & of course 100% true. Its appalling how we have & still are being treated/ non treated & funding near impossible for research etc.Worldwide.Most Drs don't have a clue😢!!! ❤Feeling for us all as we are Invisible & the Forgotten.Here's to help for us ALL ASAP❤🍀

This is heartbreaking! Why in my 71 years have I never heard or read about this brutal disease? If it is a confirmed disease why isn’t something being done? My heart goes out to those affected with this horrific disease. 😔🙏🏼❤️

I'm so fortunate I found my own ways to manage this....and I was not totally debilitated.

The "V" has given me something similar to this ... 36 months of simply existing, not fully alive, not willing to die ... I hobble about, like a ghost with an abnormal gait. I go from doctor to doctor, where my abnormal findings are either called ,"Idiopathic", or, "It's all in your head." Lost home, dog, friends. How many of you have dealt with this for over 3 years, or even decades is beyond me. You are stronger than I. I'm out of fuel to fight. You are all way stronger than I. I will keep all in my prayers.

Thank you, this gives me some hope that one day we will stop being disrespected and ignored. Reading all your stories is hard and makes me angry, but it also helps to know you’re not on your own. My heart goes out to you all. My first sudden crash came on in 1995, 5 years house bound, at times unable to talk, move or see clearly, everything shuts down. It's like being in a coma but you’re conscious. But, I was so blessed to have a few years before my second 5 year stint in bed, although I got well enough to go about some activities, I've never been right, with two more crashes. Just climbing out of my forth, and can't believe that my gp still remains ignorant. I don't go near them they exacerbate the condition and put me back weeks. My husband and I have documented my journey, and self manage. We must be doing something right as my crashes are getting shorter... well I have everything crossed for this one.

you need to train the GP on this illness, i've been suffering for 6 years after coming off life support, i now self medicate on the B1 thiamine programme, it works a lot of times but then i crash, the worse thing is no one seems to be listening, i was told by a psychiatrist to put thunder and lightning noise on my headphones to go to sleep, that's after i told him i was light and noise sensitive, i then told him to do one, not seen a dr now for 5 years, i now have universal credit chasing me to go back to work at the age of 65.

I think the main problem is the disbelief from others

I wish more about less severely affected, those that can function on a day to day basis but are constantly 'crashing' due to over activity. So, have some good days amongst the bad days.

This describes me exactly. I was an automotive consultant prior.

2 years after covid having this illness no one understands me 😢

Everything is horrible. The pain is over the top. I can't walk or stand.

"No help is better than help that harms." Because if they don't understand or come into it with their own preconceptions and refuse to meet what the patient is saying (or someone who is speaking on their behalf) then we're going to get nowhere and it is an effective waste of time. This disease caught me out when I was 29 but it lingered on until 32 before diagnosis. It's gradually got worse but for the most part but I can still go to the shops that's across the road from me - anything more than that and that'll take some time to recover from. I notice little things that used to be no problem for me but I'm at the point where if I try to reach out with what the problem is - I know I'm going to get a barrage of stop taking these, exercise more, eat healthily, lose weight which is a major problem. If I'm trying to tell someone that standing or sitting for a few minutes at a time is a problem, I don't think it's wise to start pushing exercise regimes when some days I'm wiped out by simply having a shower. For those that are on the extreme end of this disease, my heart goes out to them because they show an incredible amount of resilience just to barely exist. That takes an incredible amount of character even if they don't (or can't) feel like it. In the end though, it feels like we're fighting a losing battle to be heard and it's hard to be positive when confronted with this time and time again.

What is the name of the video with the grey background and white writing with blue highlights & slow music please? I had a look in your video description at the references but couldn’t seem to find it. It seems similar but not identical to the Dialogues videos. Thanks so much for the effort in putting this together

1,5 years into diagnostics now. and although i have symptoms ranging all the way back to when i was 12 (i'm now 32) the symptoms appeared really slow and were mostly livable until i were 25-28 somewhere. Then all of a sudden it started progressing faster. i'm now 3 years into not being able to stay in a full job, and is staring at the possibilities of not being able to stand in half a job soon. cramps, fever, always being fatigued and various pains have been the more dominant symptoms, but lately (past 8 ish months) dizziness, disorientation, muscle weakness and feeling like fainting have become more and more common for me. There are only three illnesses left on the list of suspected things it can be, but for some reason my doctor just refuses to get a move on and order those tests. I think i may be in need of a new doctor, but right now that's not really a possibility as the government have gotten involved and need my doctor to send them a document confirming that i have gone there for a considerable amount of time trying to get this figured out. Main problem is, i'm not sure if my doctor is willing to send that document. So all i can do now is to watch my insomnia triggered by stress about stuff i cannot do anything about comes back and ruin my sleep while waiting for the next meeting.

This is my exactly condition, including trouble swollowing. I was in hospital because I was in the end in severe malnutrition and dehidration, 1.75 mt tall and 40 kg. I was 24 and after rehidratation and stabilizing electrolites they dismissed my with diagnostica of eating disorders and depression. I have to eat semisolid food and I cant drink enough fluids. Then, I slowly develop the other simpthoms and from 1-2 weeks flares now they last for months. Rarely I can leave home and this cause always feel worse. I have very bad headaches, nausea and sometimes incoercible vomit too and no drug or diet or habit are work. Now I am 30 and even in better days I feel so tired and all I can do are a little chores and navigating on internet. My sleep quality is horrible. My medical path was exactly like described here and I have seen 6 psichiatrists, take drugs and did a lot of psycotherapy untill a wasnt able to leave home anymore. I was totally dismissed and left behind. Here in Italy it is consider psichosomatic disorders and basically mental disorders and treated like that. Obviously it doesn't work/make the condition worse. I really hope to die for some complication and I am thinking to take my life. I can't even think of a future like this, it is crazy. My life is like a desert and it will slowly but constantly worsening. I lost hope, I don't want to be illuded anymore, I don't want to talk to anyone anymore. I only think about when this nightmare will end. Now at this point, the only answer I have is the end of my life.

I've had me/CFS since 1997 and I've been finding some relief though high dose IVIG🎉

Sudden tearfulness. Someone talking to you and you don’t have a clue what they said because it’s bouncing off your head. I take ginkgo biloba which does help with concentration. People talking to me when I’m trying to concentrate on something else, it hurts my head.

So true no No one wants to visit healthcare. And encephalitis has turned very big. Prevention should be on the top of the list and educated and taught.

We need justice for being neglected and ignored. We also need finance restitution from family members who caused the illness if they have contributed to it. (Many, but not all autoimmune disorders are caused by abuse)

I wake up 9 am tired, go to sleep again until 12 pm, wake up still tired with low blood pressure, take a cup of coffe and pain relief pills, then force myself to start working with a lot of resting between hours... If I have physical activity or too much mental stress I crash. Light and sounds bother me a lot! I think I have this desease and started after COVI.🤔

This disease is much much crueler then cancer or something you die fast with.had this for over 21 years most important years and not believed or helped or relief.misses out on life and etc

my symptoms rage on but a lot of relief came when I started focusing on anti parasite anti fungal protocols. thinking the body is an ocean not a pond, avoiding live seeds like sprouts and chia that could use my body as soil making it even more challenging and difficult bc they get lodged somewhere. Staying more alkalinic then acidic. washing my skin with saline / bicarbonite to keep the skin dry to prevent under currents of infection. constant cleansing of sinuses and ears with saline. and bicarbonite. all help in feeling refreshed while fighting the pain and body challenges.. I'll keep posting here as i find what works.

From Afghanistan, 3 years with this illness.