6. What is it like to have ME? (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)

What is it really like to have this debilitating neurological illness Myalgic Encephalomyelitis, which is thought to affect 250,000 people in the UK and millions throughout the world?


For more information about ME, please see:

Quoted in the video:

[valkykun]

I'm a teenage girl with CFS. One of the worst things about having it is that hardly anybody gets you. They keep telling you to pull yourself together, pushing your body further and further till all you can do is lie down and do nothing. As a young person, there's so much things that I want to do but never have the strength to complete. My friends think I'm boring and slowly abandon me. I do my best to get over this hindrance. I'm trapped in this dark room while the bright life runs away outside.

[idamedby]

Gods this was painful to watch. I litterally cried, because it was the best description of my current situation that I've come across. Thankfully, I have a moderat level of ME, and I can not even imagine how I would survive it at full effect. My education and career has come to a screeching halt, and my life mostly consist of just trying to get through another day. Trying to explain this to people is so hard, especially when you do not look sick, but constantly feel like you are slowly dying. Thank you so much for putting it into words so well.. 

[jmurray]

This video describes severe ME/CFS very accurately. To put it into perspective I used to be a heavy drinker, but even the worst hangover I have ever had is still better than how I feel most mornings/days. I still have a full-time job at the moment, but it is beoming increasingly difficult to maintain and of course the resultant absences put that into jeapordy all the time. It's incredibly frustrating because on one hand you don't want sympathy but on the other you just want to be taken seriously and for people to realise that this is a real illness and not just an excuse for being lazy. Your self confidence also goes down the drain when you watch people in their 70s and 80s who have more energy than you!!

[ojiwusp]

Thank you so much for this video. I have had ME for 17 years. I lost my career, my hobbies, most of my ability to leave my house and almost all contact with other people. I am alone every single day. If it weren't for the company of my dogs, I'd have no company at all. Yet people don't understand how devastating this illness is. I have a hard time explaining it to them and even if I can, I look normal and I think they really don't believe how bad it is. If they did, I can't believe they'd leave me here all alone like this. Nobody likes it when I do talk about it because they think I should be more positive. And yet I yearn for my family and friends to understand what I'm living with. It helps to know there are people out there who understand it, but my heart breaks to think others are living the life I am.

[WillowTheCobain]

The person i love has this disease....i didn`t know this disease was soo severe that affects every single side of his life, and sometimes i couldn`t understand, and i made mistakes with him...but Gosh, i love him so much! I would do anything just to hug him and just be next to him, cause i really care about him.  

[SCAJ]

My sister (14) has had ME for about 4 months now. She is bed bound and can barely do anything for herself anymore. It is killing me to see her like this. It is hard to believe this time last year she won bronze at the Modern Pentathlon Nationals. Her dream is to become an Olympic athlete one day. She definitely has the potential to go all the way. Elinor Jones, I promise you'll be on that podium one day! Love your big bro x

[HeliumFrogs]

I'm 17. I got diagnosed M.E two years ago after having Henoch–Schönlein purpura for a whole summer. Ever since that I've just stayed at home, not being able to do anything. I don't even have the energy to finish school. Thank you for this video.

[wingedfoxkit]

I've had ME since I was 12, was diagnosed after being repeatedly told that it was just Teenage Angst by my GP. Because of the 6 month delay I am now doing only 4 hours of school a week. I spent 7 months in my bed. I lost all my friends, all my dreams were put on hold, It was like a nightmare. However there is light at the end of the tunnel, I'm now 16 and have recently achieved an A in my English language GCSE. I can only do 5 hours of activity a day, but my improvement has been amazing. I never thought I would get out of bed. I recently walked all the way around a super market with my Grandma. While that may not sound all that good for 4 years of work, it's more than I hoped for. Hopefully I will continue to improve in the future. I made perhaps the best friend a girl could have. My life is looking up. I hope others with ME also have my luck.

[harrybolton]

I suffer from ME. I'm 13 years old and was diagnosed early Summer 2012. I now do part time at school and this Monday I was too drained to get up. I was in bed until Wednesday but my mum had a call from a teacher saying that I need to see a doc again, but we all know it isn't curable. This video is very clear and I think that it should be spread further so more people will understand.

[asianprince]

If only people understood what it feels like to have this. Some days are better than others but unfortunately its not a quick term illness. Hoping my recovery will come sooner than later.

[brahmoone]

Anyone having CFS symptoms that came in gradually should check their dental health. My 4 months of CFS was caused by asymptomatic dead tooth with huge cavity on its side. It hurts when tapped with spoon. Rotten tooth, bad root canal, check them all! I strongly believe CFS is the exhaustion when you have continuos inflammation or infection, how localized it is.

[GetWellFromME]

Thank you. Most doctors in this country too (UK) do not understand anything about ME. It is shocking that your suffering with ME is even worse than the cancer. Sending you best wishes.

[frangipang]

Two of my friends have Fibromyalgia/ME. Myself too..for 25 years. Another friend commited suicide because of it. She couldn't cope. What amazes me is, if that's 4 of us, this illness must be much more widespread than we realise.

[madaboutguitar]

Wow, that was depressing but accurate for many people. Certainly for me in the early stages...

[BlotBlackInk]

I developed this disease around 2003, I was16 years of age, it was literally like a nuclear bomb went off inside me. I have come SO far over these years I'm now 26 years old and I can confidently say that I'm beginning to recover, I know how difficult this illness is. It's especially isolating when no one knows what you're going through and they just assume you're stand-offish or unsocial. It's so important to have support. If you don't have anyone you can turn to there are lots of people on youtube and online who can understand what you're going through. hang in there, eat as well as you can, let yourself rest when you  feel you need to... I know that it's tempting to always want to fight it because you feel you're being unproductive, but sometimes it's better to let yourself rest than to fight it and make it worse. Seek out only things that uplift and inspire you, avoid negativity from others, don't beat yourself up. Love you all.

[paraibablue]

I can relate to everything you say. I am in bed even though it's only 4pm feeling sick, ill and exhausted. Almost too tired to watch a 7 min video.I've had ME for many years and tried everything to get well.I've spent thousands. Nothing has cured me. Some days are better than others, but even on my very best I can only do a fraction of what most people can do day after day.

[frangipang]

Love you...thanks. I want to show this to my sister who doesn't get it. Family wedding coming up. I have told them i can't attend. It was painful, blank stares, silence. That hurts more than my ME. Take good care.

[whatshesaid]

Wonderful video! I'm a fellow sufferer - I was a full time student studying Physiotherapy at Uni when I had to receive a series of vaccines as a condition of my training. After this I developed M.E and have been ill now for 2 years. I have discovered mine is related to Candida and I follow a strict protocol which has helped so far. I know what it's like to lose your dreams/life everything because of an illness and I'm still struggling with grief over the lost of my education and career

[cocojinx]

I am 13 m and I used to be extremely active and I have me and have only had it for 11 months and every thing he says is true, my education is just getting worse and practically nobody I know understands what it's like

[partofthegreatestawakening]

I am within days of a confirmed diagnosis of ME after nearly a year of suffering. The worst part is no one understanding what you're going through...apart from all of us! Message me on here guys I'd love to speak to someone I can relate too!