I have had ME/CFS for about 20 years now. It has robbed me of the possibility of having a career, a relationship, family, traveling... all kinds of things. I work a little, exercise a little, but everything wears me out. Thank heaven for my dog-- she loves me anyway!

I have M.E. I am a single mum so when I was bedbound, with eyemask and ear plugs etc, all the severe symptoms, my two daughters could not live with me for four years and I had to have full care. It was purgatory. My parents still do not believe I have M.E. The disbelief within the medical profession is unacceptable, and adds to families not believing.

My heart goes out to all ME sufferers, but especially to those who don't have a supporting circle of loved ones and professionals.

I have ME and have found absolutely NO support from any doctor, family members or friends. It's horrible.

Its 2020 my neighbor has cfs/me and can no longer work. Her disability has been denied. This is unacceptable and disgusting that people are being treated like this. The world needs to change and fix all these awfull diseases that people suffer from.

I'm severely affected by M.E. Please believe us. I'm 49 and diagnosed 15 years. Had first collapse about 18 years ago. I fight every day of my life. Thanks for this documentary.

I'm also an ME sufferer although not as severe as many in this video. Thank you so much for this documentary. The hardest part of my disease has been dealing, not just with medical professionals who don't believe me, but coworkers and friends who think it's all in my head. It's so hard to deal with the illness, and this is only made worse when you feel there is no support around you.

The husband of Sophie is so caring. The way he’s so gentle and tries his best to understand her needs and asks her what’s okay. He advocates for his wife and explains to people coming in. Get yourself a husband like Phil!

It KILLS ME that most people around you STILL just think that everything is caused by depression and laziness! Or they just think you are bat shit crazy.

I was diagnosed last year when I was 14. I’ve had to leave school, I’ve recently lost everyone, all my friends and my boyfriend never bothered to support me, so I’ve had to cut them off, I couldn’t deal with that treatment. I don’t have anyone else except my mum who I live with. I go out about once a week maybe, if I’m lucky. I don’t talk to anyone, I don’t have siblings and my dad hasn’t lived with me since I was seven. I already had depression and was suicidal, but now it’s so much worse. I’m getting help after a long time, but it’s not much. To everyone with this illness, I think about you all everyday and I don’t feel as lonely :)

There should be a public inquiry into those unethical psychologists that took decades worth of funding, and the medical insurance industry who also benefited by not having to pay out patients, as they claimed ME/CFS was psychosomatic. Together these charlatans intentionally kept biological/medical research to a minimum via misappropriated funding by producing statistically questionable research results. Those results scared off biomedical researchers into avoiding looking at ME/CFS, leaving patients to suffer years longer than necessary. The whole thing is utterly appalling and ultimately greed driven.

I am one of the lucky ones My ME is not severe, but I have it. Sometimes I think maybe I'm making it up, perhaps it's just me vying for attention...... but the pain I feel is so real. If I had a penny for every time people have told me to just 'get some fresh air' or 'do some exercise' then I would be a millionaire. Working a part-time job is a struggle, it's exhaustion in every single way, but I can't just NOT work. I don't suffer with digestion issues, I've never even heard of that being a symptom.

Ive been diagnosed for 21 yrs now. It's worse with each day. Thank you for this documentary. PLEASE, continue for those that can't speak for ourselves.❤🙏❤

my mom has M.E, she is the most wonderful and strongest woman I have ever known. I grew up with not too good conditions, but mom always made sure to keep them away from me. She used to be able to stand back then, she used to be able to look at a screen without getting dizy, she sued to be able to sit by the table while eating, she used to be able to talk in the phone for more than 30 seconds before getting exausted and fever-y. She already suffered from depression and grew up being mistreated both by family and by state. She fighted away drug addicts away from our family's connection-lines and she did so much to make sure me and my sister wouldn't fall into the same path she did... I don't know how to explain the feeling of fear seeing the woman who once used to walk you to day-care, now when you're in college can't leave her own bed. I am extremely worried for her because especially the past 3 years it's really been going down hill. The heatwaves here in Sweden the past 2 summers had her body get panic attacks. She escaped to norway last summer to her sister because it would be cooler there, and when she came back she was able to walk, she cooked and I constantly came to her like "MOM no you're going to get bed bound!!" because I didn't understand how big of a difference and what a positive effect the weather there had on her body. However now it's winter and she is bed-bound again because it's too cold. When I hear people wo have M.E, and then got better, I just hope for my life my mom also will get better. It's really worrying when you have talked to your own mother about suicide because you've had nightmares of her killing herself because she simply can't cope it anymore; and that while talking to her about it, she is honest and explains that yes, she is suicidal, but she would never do it to herself because she knows me and my sister couldn't cope that... I really am greatful she has her boyfriend (would be husband, but if they got married, that would prevent her from getting daily service help by the state because 'her husband can take care of her' despite him working so hard to earn money for both him and her). And for ANYONE who DARES to say this illness is bullshit.... FUCK YOU I HOPE YOU BURN DEEP DOWN IN HELL BECAUSE YOU ARE DENYING SO MUCH SUFFERING NOT ONLY AFFECTING THE ILL PERSON, BUT THE PEOPLE AROUND THEM!

I am 22 years young. Last year my body started giving up on me... constantly tired, my muscles in my legs where weak and constantly cramping, I could barely remember anything from the day before and my mind has been foggy, had zero appetite, stomach cramps, my eyes started feeling overly sensitive, HORRIBLE chest pains, struggle breathing. The list is LOOONG. Visited MULTIPLE doctors, many tests were done and the doctors did not find anything irregular. When Hannah said no one believes you, i felt emotional because that's exactly how I felt. People could not understand what was going on, and eventually I was put on antidepressants. It's been 3 months now, some of the symptoms have been gravely reduced - they said it was all in my head. Some days are better than others, but I sure hope I'll be able to get my life back. I miss being young.

This is literally the only time anyone has mentioned muscle spasms as a symptom of CFS. I thought it was just me, even my doctors didn't know what the spasms were caused by. This was helpful to see other people's experiences.

I had no idea what ME/CFS was until I found this video. It’s heartbreaking and interesting. To be heard and not believed is something I understand completely, but to not believe physical symptoms and signs is insane-and then referring people to psychiatrists and them saying what they said?! It’s insane and I pray for anyone who suffers from this and hope there’s some way to manage and cure this. God bless you all. Thank you for educating those of us who have never heard of illnesses like this. ♥️

I have ME and fibromyalgia and the last year has been tough. I feel so sorry for anyone with ME with children. It has to be so hard emotionally knowing you can't be the parent you probably hoped to be.

I'm 25 and have very recently finally been diagnosed with M.E after believing I had M.S. I've found it very difficult to cope with a 5 year old hyperactive little boy, and an 8 month old boy too. I sometimes have suicidal thoughts when things are very bad. But hearing you improved after a few years makes me feel hopeful.

It is EXTREMELY rare to ever get better. That's important for people to understand.

I am a doctor and I have ME/CFS. I was a senior paediatric trainee when I took an antidepressant (just one pill at the minimum dose!) for severe unrelenting depression with suicidality... and I became unbelievably sick. When my acute illness improved two weeks later I remained absolutely wiped, aching all over, and with intermittent spells of drowsiness and brain fog. There is so little support for this. Most of the healthcare professionals around me either don't believe in it or think it's a bit of tiredness and that I'm being precious. My career has ended; I got told that if I can't stand on my feet for 6-8 hours I shouldn't be a doctor. I've tried to kill myself a few times since. Hearing you read extracts from your journal was like hearing my own words. I really hope there will be a treatment one day, something that makes this hell better. All I can think of is that if I died, perhaps I would be reborn into another body and this wouldn't happen to me....

My wife had 4 children, also has ME/CFS , I did the child raising, but these events took her to near death relapses which lasted for many months to years, she still has ME/CFS.. the children have grown and left home, I am still her carer. but I see some improvements she has been ill these past 4 decades..(Australia)

Emma you did an incredible job - you had such a compassion for everyone you met. You helped me feel more supported and hopeful with my ME. Thank you!

I had this in 1984 but gradually got fitter gradually over years never completely recovered but found ways of coping and lived a life where I worked but hid that I'd be ill and managed my life that way. At least I had a life. I got covid in 2020 and I'm right back where I was in 1985. My heart goes out to all those affected by this awful disease. Can't believe that it's still so hard to get help or be believed.

Having Fibromyalgia with M.E. Is a difficult set of illnesses. Although we have a lot in common, you have to look at your own set of symptoms and de-stress as much as possible.

Only people have ME understand it. I have ME and apart from suffering from the illness I suffer from the missed treatments from the doctors too

Great documentary, I was diagnosed in 1989 with ME. I am now 54 and currently experiencing a crash, hence KZfaq surfing. I managed to get 80% most of the time. Had glandular fever for 2 weeks in bed at the age of 10, but me developed in my late teens. Missing out massive chunks of life in dark rooms, I lived to the max when I could. Can't even begin to think about the suffering endured by those that are continually bed bound. I found nutrition and Tai Chi/Reiki really helps me keep a semi normal life after having to adjust my life dramatically to cope. Love to all those suffering right now.

Thank you for documenting ME /CFS. I was diagnosed with CFS and fibromyalgia, and I also have low thyroid. I am heartbroken for these young people. I was in my 40s when diagnosed, and it took many years of the process of elimination. My symptoms range from being bed bound to exhaustion, which is just debilitating. Headaches and pain in all my joints either can not sleep or sleep too much. Swelling, rashes, sensitivity to noise, bright lights, pain if someone touches me . Bruise easily, weird things like blood cell issues, rare conditions like ackenbach syndrome heart palpitations, dizziness, nausea, list goes on. My immune system is compromised. I was always active. Ballet, martial arts, horse riding, gym. Now I can barely walk. This is very real, and it is important we talk about it and educate people. This is not an invisible illness. This is a condition that takes lives.

I've just been diagnosed by an immunologist at severe stage I've been ill for 10yrs now and this video has had me break down crying. Merins quality of life is very similar to how I experience mine, being bedbound, underweight, never awake, never eating, breathing problems etc. I get suicidal, everything I enjoyed stolen by my own body.... Prisoner. I am 35 and a mum of 4 aged 17, 16, 1e and 11. I don't get to see much of my kids each day at all and miss so much about it I've greived over it and still can't except it. I take 63 tablets a day now and have numerous health problems that e almost took my life several times.

I will be shocked if Merryns cause of death is ME/CFS. I often go to the Drs and they say to me....its your ME, so we cant look into these symptoms! I say, yeh i bet when one of these so-called symptoms kills me, you will be quick enough to say....oh it was a heart attack. They won't put it down to my glandular fever ripping apart my body and me being given an ME/CFS diagnoses. Thank you to Emma Donohoe, I'm so proud of you for making this! And to any future studies please point them my way, I have so many war stories of my experience with ME you wouldn't even believe it. Even now, this coming Monday i have to face my dr who has been dropping my medication down forcing me to stop taking them. This is probably my 20th Dr, I have been told everything from them from since i got sick......go sit out in the sun! Another said go to bed with positive thoughts and in the morning you will feel better, my personal fav was a Dr who told me i just needed to take up drinking alcohol. I have so many things to say, the way drs have treated me has been nothing short of abuse and bullying. They have stopped my medications but funny enough, never my antidepressants, why? Because they think im nuts. It makes me so mad that i went through my medical notes and found test after test of negative results, Yet each test or scan always showed something i wasn't told, that to me was exactly what i was complaining of. I came down ill in 2006, yet was never told until i got my notes that i tested positive for the Epstein Barr virus. I didn't know anything was found. So here i am in 2018 a man in his 30s who had no 20s and no 30s at this rate, and im still perceived as nuts! Benefits and the Drs don't believe me, Yet i am a shell of a man. Did the drs care about my muscle twitches and dying of muscles? I have muscle lose everywhere, back, legs, shin, chest, arms and Even my tongue for crying out loud! Imagine how scary that is. i can't catch my breath, ever. Im always breathless. My heart pounds and when i try to stand i fall. My bones hurt deep inside, my joints changed. Bone formed on bone! My knees point out. my hip bone thickened, my fingers changed, my body clicks and crunches all the time! My knees bruise and lock up for no reason and the pain is unreal. I always feel like im aching, my joints on fire. My fingers, toes, and skin are now super stretchy and bendy. I have lived with what also feels like the flu for over ten years! Every single day, I pick up illnesses from people like no other, i can sit in a room with someone with a cold and catch it right there and then. That might sound crazy but i feel it affecting my body that fast. I know i sound nuts! But i know im not. I also have 100 little symptoms that i say are little, but when they flair, it can be the symptom i hate and hurts the most. Im well aware that no one is most likely reading this, but i wanted to write it anyway. I have never truly accepted my ME/CFS diagnoses, I see the way Drs look at me like I'm mental, Hell if that's true, then fine treat me as such and use kid gloves when talking to me! Why are they so nasty? I just hate this. I believe ME/CFS is a group full of unknown illnesses all chucked into one group, years ago i went to an ME group and in no time it became clear to me that people with ME/CFS/EPSTEIN BARR, LYME DISEASE, MASS CELL DISORDERS, autoimmune DISORDERS, and psychosomatic conditions were all given the name ME as their diagnoses. Its the reason why 1 size doesn't fit all with treatment. Lastly i will say, if only Drs could see the money i have spent on importing into the country tablets, supplements and also the long journeys to see people/Drs who said they had my cure, they might then see the truth that i am a very sick man who has done nothing but try to stop this illness killing me All i know is that i was happily working full time in 2006 and enjoy life, to someone who picked up a sore throat that just wouldn't go away, and spread throughout my body like a virus with bad intentions! From that day forward it would never go away. I lost all my friends, my money and most of my family! I couldn't see my sick grandad for years who i loved dearly, he died and i still hate myself so much now for not trying harder to see him! Yet the Drs in sync with the benefits symstem punish me and call me a lier at every opatunity. Only if they took the time to see me, instead i get a 5 minute apointment generally talking about why i dont work..... Noone speaks for the silant, until now. Thanks again.

What an incredible documentary! I have been sick with ME since 1988 when I got sick at age 14 from an acute viral infection. I have been disabled from this disease for 35 years. In my sickest years as a teenager and young adult, I was bedridden and had to use a wheelchair to even attend doctor appoint or be taken for a walk around the block for fresh air. Fortunately, in my later twenties I improved somewhat and could participate in life “part-time.” I am now 49 years old and I am amazed that I have been able to still have a fulfilling life despite the ongoing pain and illness I endure daily. But the only reason I am still here and didn’t give up and be lost to poverty and taking my own life is because of the support of my mother and my identical twin sister. They have looked after me, believed me, and supported me - emotionally, physically, and financially. I am just overwhelmed imagine life without them and thinking of all of those who are suffering without supportive family and friends!!! Thank you for continuing to spread the message of ME and the need for research and education! ❤❤❤

I just passed the 38 year mark of having ME. I truly understand how you feel. When I moved to England to be with my husband I found the one doctor in all my years that knew what I was talking about. Instead of living either in bed or a wheelchair my husband and Dr Waldon helped me regain most of my dignity. I can walk with a stick and go up and down the stairs in my home...most of the time..)

May our Lord be with all the scientists and Doctors ,to find a cure for ME ,what a heart touching story , a lot of people do not no about this terrible desiese ,God be with all those fighting to over come this !

The same thing happened to me in my late thirties , after glandular fever . I'm now 50 and I'm much worse . I pushed through far to much and for far to long . My heart breaks for young people with this horrendous disease xx 💙💙

I was diagnosed in 2003. I was a single parent. CBT did not help me really. Graded exercise helped when I worked at my own pace. Which was literally a minute on each machine e.g. bike, rowing machine etc. I changed my eating habits omitted sugar, gluten, dairy and I had also developed intolerance for nightshade foods. Fortunately my job allowed me to be flexible. I joined a local support group in the initial stages which helped. It's now 2018. My symptoms are not as bad as they were. Some have more or less gone. The underlying fatigue is still there and I am more in tune with my body now and meditation has helped also. My recovery to this point has been down to a deep strength inside that I never knew I had and my daughter and angels along the way . Even when I felt i had no strength in mind or body. I somehow kept moving forward. It is really sad that 17 years later and after watching this video...there appears to be little or no progress in terms of awareness, funding, treatment or finding a cure

What an amazing husband Sophie has!!!!

3 years after my diagnosis, I’m finally 50% better. It’s been so hard

It seems obvious to me that M.E. is caused by people not having the support that would afford them the chance to rest properly during and immediately after an infection, so the body's defences against infection end up going wrong as they're placed under more strain, and getting into vicious inflammatory cycles which then become self-fuelling and thus autonomously perpetuated - a process of which we know little. I think the main reason M.E. is overlooked, brushed aside and blamed on the paranoid imaginations of the victims is that it's indicative of an economic infrastructure that knows it's pushing people to near breaking point, and that knows it frequently pressures people to choose between going destitute or being physically superhuman, pushing themselves through all their bodies' warning signals until they break. And then those people either have to find it in them to carry on without a break, or they have to get rehabilitated to go back to work ASAP, or they end up getting effectively tossed aside by the workplace as used goods (followed by government trying all kinds of ways to dodge giving them the benefits to which they are entitled as people forced to retire due to ill health). As soon as that vocational pressure is outright acknowledged as the cause, and as a nation-wide issue, there will be mass pressure to halt said relentless whipping-on of people. Without the productivity that whipping-on past sensible limits drives, the economy won't be able to keep growing out of all proportion, as it is right now with competetive employment/marketplaces, and people who have a psychopathic love of hoarding money won't be able to squeeze as much of the stuff out of the masses' work. They know, but to prevent that from happening, they pretend like it's any cause but that one. That pretence gets harder and harder to do as peoples' bodies suffer more, and the cause of that suffering becomes more and more obvious. But it's a denial that will continue to progressively ridiculous extremes, and, indeed, to the bitter end if allowed.

Finding this video due to trying to learn about my friend s life without bombarding her with questions I now feel absolutely heartbroken now having a better understanding on how much day to day life is a struggle

It's been a while since I watched this short documentary and I forgot just how good it is. Kudos and thank you to Emma Donohoe. I hope she is still doing well.

It’s so sad, and today I found a random link on the NICE website that informs the NHS about ME; that says NOT to test for B12, NOT to test for ferritin, NOT to recommend supplements...to me patients. FROM NICE as body that also specialises I cost cutting advice... how can this possibly be justified, when both ferritin iron stores and B12 NEEDS to be ruled out at the very START of any symptoms.

Just been diagnosed after suffering chronic fatigue and digestion problems for over 6 months. Run my own business but have real trouble keeping up. My main problem is that I used to be driven, now I am energyless and it is getting worse. Did 3 hours light work today and now I have had it. Nothing helps, not even a sugar boost. So so frustarting.

I don't have this disease , but I watched afflicted on Netflix I was really interested. This is such a MAJOR DISEASE and I was so amazed I had no idea what it was. Honestly, it reminds me of HIV when it first came out in the 80's. I will continue to learn more and choose to raise awareness. Your such a brave, wonderful soul for going back in time to help others and explain this disease. Much love.

I have had ME for 14 years I am 60 now...it has ruined my life 😢

I thought I had a type of chronic fatigue syndrome for many years, felt like I was dying. Turns out it was a sub-clinical sinus infection that went undiagnosed. It took 4 years to finally get diagnosed. They tested me for almost everything but nobody thought to look up my nose (the lining was very swollen.) My blood tests just showed an elevated WBC and C-reactive protein levels. All I needed was antibiotics and I never got it when I was at my worst. I suffered unnecessarily and I can never get that time back.

I wasn't sure what this documentary was going to be like..A lot of these kind of docus have good intentions when it comes to understanding M.E but don't always get there but this was pretty good.I thought it was a good thing that they followed some of the more severely effected people.I have experienced M.E in its more severe form and know how tough it can be. Hearing Merryn's story did bring me to tears.She seemed to have such a big heart and I feel for her family. I found it interesting that the doctor who specialised in M.E had suffered himself.I think sometimes having firsthand experience of CFS is the only way people can take it seriously. Thought all the girls who took part in the documentary were incredibly brave.I feel so crap about how I look right now that I wouldn't go near a camera. When I feel strong enough I want to write a book about some of my experiences to go some small way to helping people understand the illness better.I have always liked writing so I want to pour everything I have into my book. Thank you Emma for speaking out.To everyone reading this who has M.E or has posted here I hope things get better for all of us soon.Big hugsxxx

This is absolutely heartbreaking. I am so, so sorry people are suffering from this and that their families have to suffer too. Prayers for everyone.

I got diagnosed with M.E. at the age of two years old. The symptoms it causes and the general disturbance to life is horrendous. Thank you for highlighting this in such a well made documentary

Dr.'a need to trust that the long suffering patients know more then they do. I've been researching for 25 years.

I have chronic fatigue, POTS and EDS. I’ve been hospitalized for fainting in the past and am debilitatingly exhausted. Doctors have dismissed me for years and have done nothing to help my symptoms.

I’m a teen with me/cfs. Thankfully it’s mild, but thinking about how much I struggle now I’m quite frankly terrified it’ll get worse. I’d give anything for a cure or at least better treatments. Much love and support for fellow sufferers💕

Thank you so much for this. My son is 24 and I believe that soon not only might there be reliable treatment but enough recognition that ME is an illness that he will feel ok to accept that it is ok to have ME and to ask for help. I am grateful that he is a lot better than he was in his teens. But the psychological damage caused through ignorance and judgment will last long after any physical symptoms are managed or cured.

Some people have developed ME type symptoms after contracting Covid. This has sparked an interest into looking again at ME. It’s taken a pandemic to make people think that maybe this isn’t all in the mind. I’ve had it 38 years after getting Epstein Barr virus so if they research Covid ME maybe, just maybe they may begin to accept that it isn’t physiological....we live in hope!

Got it at 21 in 1975. Didn't get a correct diagnosis until 1995, by that time my life and health were a wreck. Nine major surgeries since then. I've had cobalt and chromium heavy metal poisoning from a metal hip implant that spent ten years dissolving into my bloodstream because the maker and surgeon both failed to notify me that there was a problem with that model. I had 600% of the safe level of chromium and the same level of cobalt which has no safe level. Good luck to those fighting it.

Thank you for this documentary :) I was just diagnosed with M. E. I live in Ontario, Canada. I am 48 years old. I suffered for 2 years before my neurologist diagnosed me. Thank God for universal healthcare! The endless doctor visits and specialists... Scans, MRI's and blood work! Mine is not as bad as this. I have extremely sore joints so most movement is painful. I cannot walk without a walker because my balance is so off, feels like the ground is tilted. And when I do walk, it's not very far. Any exercise is exhausting. If I overdo it I'm down for days at a time. Having a long conversation is almost impossible. I can't find the words I want to say at times. Concentration is at a bare minimum. My head will hurt and I get dizzy. Only being in a reclined position is when I'm most comfortable- seems when all my limbs are being supported and not stretched out or pressure on them. Just before I got sick, I was in the best shape of my life. I was at the gym 6 days a week. I was doing home renovations as my work and I loved it. I just started taking CBD oil for pain and so far has worked ok. I am on other meds too which seem to help. I am thankful to have a wonderful wife and loving family and friends who are very supportive. I do pray that this goes away and I can have a normal life again. I pray for all you who are suffering from this illness

That was pretty good. Thank you! My only criticism is that they’d put a brief explanation of how the majority of government funding has gone to the psychs and that if broken down, that 3.5 million over six years for 250,000 plus patients is disgraceful. But thank you very much.

Thank you for this. I've lived 35 years with ME/CFS and didn't know there is a much larger gathering community of us. I didn't know what millions missing meant until this documentary.

There is a test which proves the post-exertional fatigue in ME/CFS. It’s called a 2-day CPET (cardiopulmonary exercise test), where people with ME/CFS cannot repeat the results the next day, whereas ‘Couch potato’ controls can repeat the results. The 2-day CPET is not advisable for many ME/CFS sufferers, as it may cause a crash, sometimes a long-term one. It’s mainly used for research purposes, and to prove ME/CFS cases for disability insurance. Google ‘Workwell Foundation’ in California for more info. They would know where the closest testing center to you is.

I have had ME/CFS for about ten years now. Self-diagnosed but I have had all of the symptoms and know it's what I have. Thankfully, I am in recovery now and the suffering has eased. But my heart goes out. Anything I can do to help others that continue to suffer I will.

What a heartbreaking watch. I have ME/CFS myself and live life in a bed most of the time, occasionally a wheelchair or a sofa. I know how serious it can get and I'm thankful I can talk to and hug my loved ones and at least my mind has started to function a little. But it's nearly 2023 and where are we? Still no treatments, but closer than ever I hope. NICE guidelines updated and people starting to believe it's physical, but still many that cause harm and an even greater number that just don't understand at all. Documentaries like this are so needed. It's painful to watch. And for me I can already feel my symptoms flaring, lymph nodes swelling and headache starting. The inevitable result of feeling choked with tears and emotion. Because with this illness it can even be harmful to feel the grief.

Does anyone else with M.E. suffer with convulsions and body twitches just as the brain is going to sleep?

I have severe M.E since 10 years and I have been bedridden 8 years cause it. I had 9 months of very severe M.E in 2016. I am invalid cause M.E. Much love from Rome

M.E. is just a awful disease, I cannot imagine having to go through the disease and having people so heartless not believing you are really sick and not faking it. My heart goes to all of the people who suffers from M.E's

Ive had me since 2005. I was very fit,then after a 5 week throat infection bam!! my life as it had been was over.

Thanks so much for the documentary. I have moderate ME, so I'm not bed-bound. But I can relate so much with the content! Thanks again

For the past three years I've been treated for OCD, PTSD, agoraphobia, depression and anxiety since my dad died unexpectedly. I'm 41 with 4 kids but I'm really struggling. I'm really starting to wonder... the brand of fatigue I've been experiencing is debilitating. I still work part time as a nurse so we don't lose everything we've worked for but all of my time off is recovering in bed. I barely even eat because I get dizzy spells and muscle pain every time I get up. I'm afraid to mention it to my doctor because I don't want them to think I'm just trying to diagnose myself but I'm so desperate. This is the loneliest life.

Thanks so much for making this documentary !

Thank you so much for this well informed, educational, and empathetic coverage of the realities of ME. Well done 👍🏻

I am 62 in june I suffered with ME when I was 28 years old,sportsman into swimming,one day just woke up went and played 5 aside for my local council team played 30 mins and fell to my knees with excaustion,just blamed it onto my day job as I was a builder,never thought anything of it always tired coming home from work and going to bed early because of my tiredness.How I found out there was something wrong went to corfu with my sister ok first week everything normal the 2nd week I could not lay in the sun all my joints hurt ect,I went to doctor had all these blood tests he said im ok but I knew I was not,so I had ms test and it was not that thankfully,I had biopsy done they found out I had ME with roots attached to muscle tissue,they asked me in hospital have I had a illness in the last few years,I remembered and told them I caught measles off my daughter when I was looking after her,any bad illness can trigger ME as it destroys the immune system,after it destroying my marriage I decided to move to spain my symtoms got better still could not sit on beach.could not build or do anything physical so I employed men to work for me and I ran website and sold property,also spent last 3 years in corfu Greece had to come home could not walk on left leg and also could not afford medical treatment,Arrived in UK October 2016 was on plane with everyone either coughing or sneezing,I caught flu and was in bed for 2 weeks and 4 weeks all together before fine,Starting feeling weak again even went to London to pass my doormans licence also passed my CSCS exam,while I was waiting for a paper from Greece I was on jobseekers but was on that for 18 months,but during that time I was getting weaker,had xray on left leg nothing they can do until im older,9 months ago I was diagnosed diabetes type 2 I had no choice but to go on universal credit for my sicknesses ME,Diabetes and left leg,I have just changed doctors because he just laughed at me as if I was putting it all on,had accessment With UC and they said I was able to do some sort of work,I have since appealed and sent them medical proof.I am house bound and only go out when I have to,i cant walk far or stand in a que I need to sit down and rest,I live by myself I cant let another relationship suffer again,I cant get any help because I need to be in the UK for 3 years,So hopefully this October I can qualify for PIP which can help me pay for housework,also my new doctor will find me help for my ME

Thanks so much to everyone who is working to improve our desolate situation.

I’m a 53 yr old man who cried through this. I have ME although the nhs hadn’t diagnosed this. To say they’re useless and backward is an understatement. I get zero help. Currently stuck in bed with a face mask. Seems like there is still no hope.

Omg, as a psychologist from Australia, I’m horrified to hear that CBT is considered a treatment for ME/CFS! If anything, it’d make people worse! I have this condition myself, so I totally get the struggle. Any health professional who doesn’t believe you / doesn’t bother to do their research, should be reported to their licensing board.

Well done! Emma you are quite a remarkable person! Thank you for letting us see into your world. Good luck to you!

I suffer feom ME and have shared this because people just dont understand. Thank you so much for this xxx

I had M.E and was bed bound for a year I couldn't even brush my teeth without being exhausted I got the doctor to come in and see me and she called me a lier and I was making it all up. I started getting better by myself and I'm so lucky but doctors need to understand that nobody would want to stay in their bed for a year I was also diagnosed with hypothyroidism also alot of people with M.E should I never want to go back to the part of my life I hate doctors now

Thank you for making this video. Thank you to those who believe and those who try to understand this illness. Heartbreaking for sufferers not to be believed and family gossip and think they want to lie in bed and see life pass them by. 😢

Thank you so much for making this. Raising awareness, support, and funding for research is crucial.

I was diagnosed when I was 15, now as an adult I still have issues, I was diagnosed as autistic in adulthood, the other issues I have are with fatigue, GI issues that don't fit IBS which health professionals constantly say I have, pain and subluxations in joints and odd pains in muscles, constant 'injuries'. It has been suggested I look into heads and it fits but most doctors know nothing about it. After much research I'm convinced there is a link between, autism, chronic fatigue/ME, fibromyalgia and EDS.

A very informative documentary, quite upsetting to watch but hope it helps inform more people of this terrible disease!

This is the first time that I have been able to watch about Chronic fatigue syndrome and feel like I'm not on my own with this and that one day hopefully their will be more that'll be able to be done to help people who have this horrible condition I'm currently starting with a crash and what they say about getting a wash is so true you feel better for being clean but then you feel awful and by the time your recovery has passed from getting washed your in need of another wash Hopefully programs like this will help get the word out and more will be done to help those of us with this horrible condition

Happy for your partial recovery.

I've suffered for 25 years, and I still have people.close to me poke fun when I crash. It's heartbreaking. My bosy and home is a prison for weeks or months at a time . Mentally, it's very difficult to deal with , but we have to keep pushing I'm blessed to have a supportive partner . Some people have nobody . Heartbreaking illness for so many of us out there Let's keep our fingers crossed

This documentary is very sad; however this has been very helpful. I was only informed that I had ME 1 year ago after suffering for quite a while. The first time I did notice my unusual fatigue in my teens after having glandular fever and then it progressed to Stomach problems, monumental headaches, Chronic pain and 'brain fog' in my mid 30's. I had no idea of what it was as the GP's kept diagnosing depression and I knew I was not depressed; although I had gone through another very challenging life changing event. It has effected every area of my life and this documentary has made me understand the physical issues now that were clearly present back in 2006. I want to say thank you to this lovely lady doing this documentary. I would love to talk to other people that are going through this, to share survival tips. I have really good days and I feel like in the main I am getting better; however it sneaks up on me and I never know when a relapse is coming. I do seem to have better days than bad, although it is always there.. My lifestyle is not the same though and I have had to learn how to manage with this horrendous illness; but I am learning to manage with it quite well. Love Debbie x

Great and emotional video, thank you.

After suffering from not only the mumps during my time at university, it was then immediately followed by tonsilitis and after I had recovered I thought nothing of it. I was one of those people in my younger to late teens who could have comfortably entered a televised assault course such as Ninja Warrior and my energy levels were very high all the time. Since my time at university I have been deteriorating physically in terms of my energy levels. I have had success with drinking more water and eating better as I can eat quite a lot my appetite hasn't faltered. Even with exercise in a very strict routine improved my condition for the time I undertook it. I have a family, mortgage and physical job so having time for routine or money for supplements is quite limited. I know of late the gov have stared that they believe there are issues with the gut and immune system, which hopefully will shed more light onto the illness. People not believing you is one thing but I believe this is changing and I'm finding more sympathy from those around me. I do believe that cfs m.e. and fibromyalgia are in fact separate forms of the same area and even depersonalisation as I had been diagnosed with years ago has similar symptoms. University was back in 2006 when I suffered the diseases and I have never fully recovered. My worst issues are my dizziness and heart rythem during small tasks and the fact that for many years I have felt like I'm living in a dream world, which is simply awful. Crowds are too much to bear yet I'm socially confident. Whatever happens in the future I'm certain that we together will overcome this horrible illness. Keep providing your own research to the medical world. Good luck everyone.

Nurses are LIGHTS IN THE DARKNESS, BEAUTIFUL SOULS!

Thank you for this documentary. Very emotional and true, which is hard to look at (for me as a fellow ME/CFS patient). I see the documentary is from 3 years ago, I hope things will soon change for ME/CFS patients, in treatment possibilities and doctors, governments and people taking it serious.

I just want to thankyou for this documentary on showing the reasuch on M.E it gives hope to us all that there will be treatment or a cure lets hope all doctors are hungry for info to make us better to listern and believe.

Omg the exercise! I can do what I can do but if I push it my body gives up. It's just so darn tiring.

i love this channel, always producing amazing videos, keep it up :)

I also have M.E/CFS . I used to work full time be A social person A good mother but now i barely leave my house on the worst days i cant even hold A cup or even keep my eyes open. Im lucky as I do have A wonderful partner who does everything for me. Its such A life changing illness

My heart goes out to everyone suffering with ME/CFS and other severe chronic conditions...I was hit by a car when I was 11 yrs old and have dealt with rheumatoid arthritis since age 12 and fibromyalgia since I was 15(though wasn't Officially diagnosed with them by a dr until I was 40yrs old and later was told that my CFS was just a " side effect of my Fibromyalgia").I have had CFS since I was 15 too and have only recently learned that it is a condition by itself( at the same time that I learned that my breast cancer is now stage 4).There has been so many times that Ive wished to die in my sleep.I have been dealing with crippling pain and endless exhaustion that has caused me to have unipolar depression. Been dealing with these pain conditions as well as degenerative disc disease longer than Ive been alive.Thank you for sharing this video and the struggles that ME suffers deal with.God bless you. Love from Maine USA

Ive had severe ME for 9+ years and have found these help most to come back from PEM.. 1) Midday SUNshine on most of body as long as possible short of burning, even if I have to wear sunglasses or even an eye pillow, it is the single best medicine which seem to work as natural chemo, reduces infections more than anything else and I have sworn off antibiotics after years of work building my microbiome. 2) Bone Broth, it must have thick collagen with tons of beef, lamb, chicken, or fish fats; when I cannot hold food down the ones I often can are this and ghee-coffee or sometimes straight heavy cream as it is 100 calories per oz and easy to get down and is nutrient dense. 3) thc and cbd, I need mainly thc and it is the best for pain, sleep, nausea to eat, and general malaise. When I crash and have the vagus nerve gripping pain it helps most to lay on my stomach or second best is the R side, it seems to pool blood into the vagus but helps a lot. Best..

I believe I am suffering from ME/CFS. Unfortunately I also have other health conditions which means my doctor seems to refuse to acknowledge or investigate.

Emma, well done on this film. Hope you continue to improve your health and can make more films. Best wishes from America. I have it too.

very helpful, thank u for this documentary and collecting experiences from different patients with myalgic enzephalomyelitis.

What is Chronic Fatigue Syndrome? Chronic Fatigue Syndrome (CMS) is a debilitating disease that causes unexplained fatigue and a lack of energy, which cannot be attributed to known medical conditions, over a period of more than six months. Millions of people worldwide, especially between the ages of 20 and 40, suffer from it and it occurs in twice as many women as men. Life events such as pregnancy and menopause, as well as socially prescribed roles, may give women a unique susceptibility. The primary signs and symptoms of chronic fatigue syndrome: In addition to chronic fatigue, which is not caused by known medical conditions, there are eight possible primary signs and symptoms of CMS, These include: Memory loss and/or poor concentration Chronic sore throat Painful and slightly enlarged lymph nodes in the neck and/or armpits Muscles that inexplicably ache Pain that varies from one joint to another, without swelling or redness Headaches of a new nature, pattern, and severity Disturbed sleep Excessive exhaustion after regular exercise and exertion People suffering from chronic fatigue syndrome also report several other signs and symptoms that are not part of the official definition of the condition, as determined by the International Study Group for Chronic Fatigue Syndrome. These include: Abdominal pain Excessive susceptibility to alcohol Flatulence Chest pain Chronic cough Diarrhea Light-headedness Dry mouth and eyes Earache Irregular heartbeat Pain in the jaw Muscle stiffness in the mornings Nausea Nagsweet Psychological problems, such as depression, irritability, anxiety and anxiety attacks Shortness of breath Stimulating sensations Weight loss Factors contributing to chronic fatigue syndrome : Metabolic energy deficiency or NAD energy deficiency (NET). Environmental stressors, chemical and electromagnetic pollution of the atmosphere and radioactive radiation Prolonged psychological and emotional stress Chronic septic foci, such as a subclinical dental pathology Treatment of chronic fatigue syndrome : Many years of experience have proven that a long-term multi-disciplinary approach is the most successful treatment. The treatment, therefore, focuses on: Lifestyle Physical therapy Diet and nutrition Homeopathy Homotoxicology Herbal Remedies (Phytotherapy) A healthy and well-balanced lifestyle is of the utmost importance and must be achieved and maintained. It involves: Adequate sleep and rest Relaxation activities and light exercise are of such as yoga, Pilates, a daily walking program, water aerobic exercise, etc. is very wholesome Reading positive and life-enriching works Caring for a pet Regular religious activity CMS sufferers can greatly benefit from physical therapy. In our practice we use: Regular osteopathic treatments Regular massage of the whole body with aromatic oils determined according to the individual case Magnetic field therapy can be of great value and daily treatment is recommended until the symptoms improve, followed by maintenance treatment. Diet and nutrition A healthy diet is essential for building the immune system to cope with CMS. Avoid all fast foods, which are low in nutrients and high in sugar and fat. Rather, choose healthy, nutritious foods that are high in protein and complex carbohydrates, such as vegetables, grains, legumes, fish, and poultry. (Avoid poultry treated with antibiotics and stimulated with hormone). Eight to ten glasses of pure, natural water should be ingested daily. (If the water has been filtered through reverse osmosis, enrich it by adding fresh fruit or vegetable juices or herbal teas.) If you suffer from candidiasis, the 4-phase diet is recommended. This diet excludes all sugar, alcohol, refined carbohydrates, dairy products (lactose), honey, dried as well as certain fresh fruits. No product containing caffeine may be ingested. The fourth phase of the 4-Phase diet for candidate sufferers proved to be beneficial for CMS sufferers. If you are allergic or sensitive to certain foods, the allergens should be avoided. Careful determination of any micronutrient deficiency is required, preferably by electrodermal screening and relevant blood tests. Deficiencies must be compensated by good quality supplements. It is essential to determine CMS sufferers' NAD and NADH levels through appropriate blood tests and prescribe the appropriate NAD supplements. Testing for allergic conditions through electro-dermal screening and/or relevant blood tests, IGE, Rest and phadiotope tests are invaluable in removing allergens from your diet and environment and thus improving the effectiveness of the therapy. Homeopathic treatment: We undertake to find the homeopathic remedy that fits the overarching symptom picture. Homotoxicology: The homotoxicological protocols for CMS are well known and have been proven to be extremely beneficial. Again, it is the individual symptom picture that determines the treatment. Treatment with Herbal Remedies (Phytotherapy): We plan a treatment protocol based on the patient's symptom picture and condition and issue an appropriate prescription. Various herbal remedies are indicated for the treatment of chronic fatigue syndrome. chronic fatigue syndrome diets that can help A diet rich in polyunsaturated and monounsaturated fats, avoiding saturated fats and refined carbohydrates-like the Mediterranean Diet-is reported by many people with ME/CFS to be helpful. Eat several small meals throughout the day. For example, three meals and three snacks might help keep energy levels up. Tips: www.webmd.com/chronic-fatigue-syndrome/tips-living-with-chronic-fatigue#:~:text=A%20diet%20rich%20in%20polyunsaturated,help%20keep%20energy%20levels%20up. Smaller meals might also help control nausea, which sometimes happens with chronic fatigue syndrome. To help control energy levels, it’s also a good idea to avoid these things: Sugar Sweeteners Alcohol Caffeine You need to stop eating sugar, sweeteners, alcohol like wine and beer and coffee or anything with caffeine, this may sound like taking away your last happiness, but if you want the disease to get better, YOU HAVE TO FOLLOW A DIET. It is SO HARD to get others to do right by themselves. Tips for living with this syndrome: www.webmd.com/chronic-fatigue-syndrome/tips-living-with-chronic-fatigue#1 www.healthline.com/health/diet-hacks-to-reduce-chronic-fatigue more TIPS please take them www.verywellhealth.com/chronic-fatigue-syndrome-fibromyalgia-diet-715718 www.nutritionist-resource.org.uk/articles/chronic-fatigue-syndrome.html These are things that can help you www.everydayhealth.com/news/foods-avoid-you-have-chronic-fatigue-syndrome/ www.bda.uk.com/resource/chronic-fatigue-syndrome-diet.html paleoleap.com/paleo-chronic-fatigue-syndrome/ www.cookinglight.com/news/what-foods-to-eat-chronic-fatigue fcer.org/foods-to-reduce-chronic-fatigue-syndrome/ www.mitolifestory.com/?gclid=CjwKCAjwydP5BRBREiwA-qrCGmm66Z8-SS6jprL8puV39k1ztptWA8w40Va7JgDiJvLPXjC5rx2RRhoC59QQAvD_BwE diettogo.com/?s=dtg-search-google-diet-mobile&coupon=DIETTOGO-FREESHIPPING-4WEEKS&gclid=CjwKCAjwydP5BRBREiwA-qrCGldVU-UmKUYL78GSUA3_QX7I3B1eUlI73YzD-CfKzyVpSd8jO9wiExoCUsIQAvD_BwE ammes.org/diet/ ____________________________________________________________________________ For hyperthyroidism diet www.healthline.com/health/hyperthyroidism-diet www.medicalnewstoday.com/articles/326275 www.endocrineweb.com/conditions/hyperthyroidism/5-foods-may-help-ease-hyperthyroidism-symptoms www.thyroid.org/low-iodine-diet/ www.everydayhealth.com/hyperthyroidism/diet-lifestyle-tips/ www.niddk.nih.gov/health-information/endocrine-diseases/hyperthyroidism www.mayoclinic.org/diseases-conditions/hyperthyroidism/diagnosis-treatment/drc-20373665 www.btf-thyroid.org/thyroid-and-diet-factsheet paleoleap.com/diet-and-hyperthyroidism/ These are helpful sites you need to open in the google browser that it can translate them to English: www.droberholzer.com/cms.html www.health24.com/Medical/Archive/Afrikaans/10-siektes-wat-jou-moeg-maak-20120721

I think once a child displays a disability it is the doctors job to diagnose and treat that child's illness properly. I suffered from symptoms of Fibromyaliga starting at the age of nine. I wasn't diagnosed until age 25. More awareness and education need to be addressed here.

I was diagnosed in 1982, thank the Gods my Doctor knew me before it struck. He told me the good news was that it wasn’t fatal, and the bad news was that there would be times I would wish it was. I have had several remissions and crashes over the years, but you can’t avoid or predict when it will strike, or for how long. I have tried everything over the years…some helped, others didn’t. It is a horrible thing to deal with.🖤🇨🇦

Holding on to hope and having people around you who say "I believe you" are two of things that help me deal with a complicated list of physical and mental health challenges (diagnoses and symptoms) that includes me/cfs.