6. What is it like to have ME? (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)
Vložit
- čas přidán 22. 04. 2011
- 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?
You can read a transcript of what I've said, and links to other helpful websites, at www.getwellfromme.com
Find my other videos and subscribe at / getwellfromme
For more information about ME, please see:
The ME Association www.meassociation.org.uk
Invest in ME (UK) www.investinme.org
Quoted in the video:
www.foggyfriends.org
/ plzsupportme
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.
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!!
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..
Ida Kristin Larsen Medby Hi Ida I agree very good video describing M.E. It does not matter what level of M.E you have it is still just as debilitating! I have had M.E since February 1996 and it is very difficult explaining things to others. What makes my situation even worse I also have Irritable Bowel Syndrome, Fibromyalgia and Multiple Chemical Sensitivities which go hand in hand with M.E. M.E also causes a higher rate of accidents and injuries and I am unfortunate to have suffered a number including sciatica and herniated disc. All these conditions are physical yet most of the time cannot see it. Effectively invisibly disabled. I eventually gave up trying to do this as it takes too much energy. What I do now is have information pamphlets I give to people certainly helps and don't have to waste energy trying to explain to people. I have also found that having a Medic Alert bracelet is absolutely essential with M.E. because as soon as people see this it alerts them that you have a medical condition even if they cannot physically see your issues. Its a life saver.
Lovely Video! Apologies for the intrusion, I would love your thoughts. Have you ever tried - Dinanlinson Rebooting Health Approach (search on google)? It is a great exclusive product for getting rid of chronic fatigue syndrome minus the hard work. Ive heard some decent things about it and my mate after a lifetime of fighting got astronomical success with it.
yeah it is BUNK info, maybe for someone with bs CFS but NOT M.E. It is actually offensive how companies try to sell bs info, as if those of us with true ME haven't pulled out all the stops already.. we need to find REAL solutions, not generic health info. Anyone it helps must have not been paying attention to diet, lifestyle changes, supplements including herbs, etc, etc.. Don't pay for anything except books, everything else is FOR PROFIT first.. Worse if you are SELLING IT?
I'm crying for meyself and other ME sufferes. I always think there are millions of disease why should i simply haven't got HIV or cancer but not ME. The worst worst part is others just ask me are you better ? And i say no and then they become silent and don't talk to me anymore. Like i have to flasely say yes i am better. All beginned after injury to my neck and CT scans show the severe misalignment in my two first vertebrae but there is nobody in my fucking country who can realign my upper cervical spine again.
True
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.
Rebecca J VACCINATION
How are you doing now? What’s helped?
I feel you 100%. I also lost everything. I'm home bounded and alone 24/7. Most of the time in great distress. I do not wish that condition to my worst enemy.
Sending you a big hug 🤗🙌🙏
@@Jana-zp4todo you happen to have hypomobility my CFS has turned into fybromyalgia
@@Truerealism747 I have fybromialgia. Well all the symptoms since they can't diagnose it. (They Xraid all my body and I have no arthritis.) And about 25 other symptoms ....
Light headed, dizzy, parts of my body and face go numb, tingling in the body, neck-shoulders-back are hurting like crazy, back is burning, I'm almost allergic to every food now, insomnia (I sleep 1 to 4 hours maximum everyday depending on the day) my body shakes, high anxiety, heart palpitations, hip pain (I get knots), difficulty to walk, 24/7 migraines, I get extremely cold or hot, eye sensitive, ear sensitive...
I am so stressed you have no idea...
I just can't anymore, I am so done suffering ... I've had generalized anxiety the past 25 years and migraines the past 30 years... Chronic fatigue the past 6 years...
I tried every possible thing available...
Antidepressants to ayurvedic to supplements to acupuncture to hypnose... Name it I've tried it..
Sending you a big hug! 🤗🙌
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.
***** Thanks :)
WillowTheCobain93 Bless you...You have beautiful heart!! My ex-fiancée and friends all dumped me when i wasn't fun to be around anymore...at time i thought i was dying. Yes people like you give us suffers hope ;)
Such a true to life video, it touched so many chords, it nearly made me cry, as I have experienced evry single thing this man mentions....
This is my life.
Same. It makes me want to end my life.
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.
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.
are u better now?
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.
Wow, that was depressing but accurate for many people. Certainly for me in the early stages...
I have ALL SYMPTOMS ALL DAY FOR MONTHS im ONLY 12 y/o 😢😢😢
Emerald hutch Hi Emerald I really sympathise with you as you are so young to have M.E! I got M.E in February 1996 when I was 21 years old but unfortunately it was not treated so my health has deteriorated to the point of suffering all the symptoms attributed to M.E. And like you on a daily basis. While you are unlucky to get M.E you are lucky that you are really young and have a better chance of improving your health. I would be interested to know what age did you get M.E and do you have a definite diagnosis? Also are you getting treatment for your M.E?
No SB relapses and additional health issues. Much frustration at the hopeless health authorities in New Zealand. I know more than they do! Its a ridiculous situation. All I want is some basic tests to rule out other medical conditions. Even a clown and a five year old kid could do better!!
Mighty Spider It's hard to explain to the family, so many symptoms. At the end of the day you are still sick. This video was a pretty good description.
@@sonjalawson4925 I have had fatigue and brain fog for about three months ever since I got a viral illness does this ever go sway
This was hard to watch...so true
Thank you for this.
This is the best I have heard some explain how we feel.
No one believe us
Every illness is recognise not Me of Fibromyalgia.
He's not exaggerating.
No he's not sadly
@@lashawnab.441 so like lupus
@@tracysmith245yes 😢
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.
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.
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.
love you, just keep positive :)
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.
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.
Thank you for making this video. I am sorry you have such a heavy case of ME. I have it too, and have had it for over 13 years. But mine is not quite as heavy. I cannot work, I lost my life savings, the home I lived in for 20 years, all of my friends, my work (cannot work), and so much. There is never a time I am 100% "normal," but there are days that are better and if I am very careful I can manage some outings and even a trip now and then. I pay the price afterwards, but accept that. I still cannot figure out when I'm "really sick" (meaning this is not ME) or have overdone or it's just another symptom of ME. Gentle hugs to all who have it, and those who care about us.
I hope you are feeling better. I have Fibromyalgia and can relate to your daily struggles (or should I say moment to moment). No one understands that I must decide whether or not to do simple things, like clean the dishes. This past Christmas I did some decorating and paid for it by having to be in bed for days afterwards. Hang in there.
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.
Harry Bolton how are you know?
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
The good news is that kids with this recover more fully than adults, and in some patients, this is usually temporary, but not always.
To whoever made this video: Thank you. You are my hero of the day. I've never heard or seen anyone describe a life with M.E. so well. You words are wise, effective and warm. I've shared them on my FB wall and I hope the whole world will see your message.
Thank you so much, it means so much to think it's helped, and even more to know that you and one of your friends can be closer and "understand it" better now :)
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
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.
P.S. if you ever need someone to talk to, or if you just need to vent, I'm here you can inbox me.
@@BlotBlackInk how did you get better? Just doing the right things like sleeping at the right time, avoiding negativity, eating healthy etc? Please I need answers
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
Sam Jones how are you know
Thank you so much for this excellent account of what it's like to have ME/CFS. It's been so frustrating explaining this to family, friends and doctors and they still don't believe me or think I'm exaggerating. Many have told me that I'm just depressed and I need to find the right medication to cure me. My symptoms aren't as bad as what you described, but when I push myself I definately pay the price and it's a reminder that I'm sick.
Thank you all! And we don't have to be sorry for being ourselves as we go through this horrible illness. :)
Incredible stuff. I've suffered 29 years.Nuff said.
Although my symptoms aren't nearly as bad as they were even a year ago, this clip is gives an accurate description of my own experiences. It did bring a tear to my eyes, even a laugh when I think of some of the things I've had to endure.Being determined not to let ME/CFS beat you, together with a great, warped sense of humour and, of course very supporting family and true friends helps. I don't think that I'll ever get my full life back, but I am learning to live an enjoyable life, not letting the condition of ME/CFS have all its own way with my body. Thanks for this brilliant clip again.
Tim Curry glad that you have support. However, bear in mind that not everyone has that and as the video says, relationships become strained especially when family members are self centred and even think that you are a burden especially with iME being invisible, Family can live right next to you and not understand because it inconveniences them and they may even think you are lazy and abuse you that you are. As the video mentions there are many ignorant doctors around who treat
ME patients with disdain, so how can one get the ignorant doctor to even educate the family. There also many different degrees of ME and factors that determine how much dysfunction the individual hasIf the sister Co- morbidity like Fibromyalgia and MCS , then it’s double whammy or triple whammy for that individual. It’s great to hear that you are not one of the worst ones and can work at getting your life back, but please remember not everyone can, and it’s not for their lack of trying. You are just sharing your situation and efforts., that’s great but the implication that others could but are not doing the same is kind of hurtful.
Yes, thank you for this video. I have had ME since 1991 and have had to deal with it nearly entirely on my own. It's very good to hear someone describe our condition so clearly. I'm going on holiday to Malaysia with my family next month - partly thrilled, but know too that it's going to be an ordeal and I will have to pay for it later. What has driven me to distraction is missing so much of my daughter's childhood - I slept through her birthday party one year.
My mother has this health problem, and I am so sorry it has happened to you... I was in denial for a good few years about it because selfishly I wanted a healthy mother and i think it was easy to ignore because it isn't visible, and I think that's part of the problem. This is a brilliant and concise video, pretty much perfect for raising awareness and covering most of the aspects involved. Stay strong, hope is the essence of life :) I wish you all the best, maybe one day you will find your cure!
You describe so well and succinctly what I have experience for the 37 years I have lived with M.E.. Thank you for speaking for so many of us who are no longer able to do so.
This is the best explanation of my life! Thank you for making this you tube! I don't feel so alone after viewing this. Hugs to all who have ME, fibromyalgia, chronic fatigue.
Thanks so much for making this. I'm 15 years into M.E. now, and this particular video made a deep impression on my friends (those who've stuck around). I will show it to relatives who are open to it and to any new friends who might come my way. After all, one has to hope.
thanks for this sum up, on the worst thing that exists on earth. 17 years for me.
I cant express how good it is for me to hear this from other people. I dont think ive ever cried so much at a video. There are people out there that want the pain to go away as much as i do, this has given me much inspiration. A 14yr old should not go through this, niether should anyone else. This is torture
I have had fibromyalgia for years and every single symptom you listed.. Your video is beautiful.. Sometimes its hard to want to live anymore.. A few kind words and others understanding goes a long ways:) thank you for this video.. You feel so alone and judged and misunderstood:(
It's been 6 years since I was hit with this and diagnosed shortly after by a good doctor that knew exactly what it was from my symptoms...but suddenly went into a different field of medicine. There's been no support medically...but I've received sooo much encouragement from your videos...the very best! Thank you!
I am a fellow sufferer & what you said really resonates with me. I am now in my sixties but was a victim of never being understood/believed for most of my life. You will adapt your life to accommodate the ME until either a cure is found or you recover... It will happen sooner or later. I hope much sooner for you. You are really brave, of course there are bad days, but you are stronger than you know. Take heart...
Thank you for your powerful story. I came down with CFIDS after catching Mono at the age of 40! I struggled to continue to work full time for 14 years , but then it got so bad that I couldn't even walk while carrying a briefcase. I kept fainting and collapsing while trying to work. Finally my doctor convinced me that it was time to accept the inevitable. I have now been out of work for 11 years on SSDI. It has gotten easier and I do have some good weeks, but it always controls my life.
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!
Thank you for speaking out for me!
Just wanted to add that you can search on ME and on Chronic Fatigue Syndrome online and find online support groups, too, as well as advice for applying for disability if you are not on it yet. When I applied to Social Security for it, I got on right away because when I applied I followed all the advice, including sending photocopies of years of medical records. Don't give up hope. Some people do get better. Some like myself have (until recently) been able to volunteer in some way, whidh makes you feel useful. Online volunteering can be done, as well as online education at your own pace. You are not alone.
Why would someone press dislike on this. It's just cruel...
The worst comment I ever had was that my illness just meant that I'm lazy. This is where we need more understanding in modern life. Thanks for reading.
Thank you. Even though many are pretty much silenced by the disease, there's probably around 17 million of us around the world - we're not alone :)
I had to leave school at 15 due to my M.E. I'm now 30 and each day gets harder and more painful than the one before. I'm more or less housebound now but even that won't stop me from trying to live the best life I can (even if it is a life most people would class as a nightmare). I'm lucky I now have a carer that comes in twice a week and she's a real help. I will never give up hope for a cure and I will never stop smiling on the days when I have the strength to smile. Life is hope
To Elisa Lalli, you ought to join the M.E. Association. You will find the address online. There you will find local support groups, and you can ask for the name of a supportive doctor in your area. I wish you well, and hope you get better soon. If you have not had the symptoms for very long then the more you can rest now the better for you, and the better the chance of a recovery. Hope you get on okay. Best wishes Daphne, Oxfordshire
Thank you, sorry to hear about all your health problems too. Many other different diseases could possibly be related to the "ME/CFS" spectrum too... watch this space, I guess!
Thank you so much. You have just said EVERYTHING that I am thinking, going through, experiencing, right down to losing friends. I have had this horrific illness for 5 months, not knowing that I also had it 3 years ago for 6 months but my GP was rubbish and just told me it was a virus. You could not have made a more informative video about this illness. Thanks again I hope you are well. I pray everyday and wonder why me. I have never been a bad person.
Me too. We desperately need support. For those of us that have none, life becomes like skating barefoot on ice during an ice storm pelting you. Or like walking thru mud waterfalls with burns all over your body, with muscle pain so deep it feels like you must've got beat up and climbed a mountain yesterday ... And nobody sees you are suffering so much. They continue to expect normal, and when you can't meet their expectations, the world becomes a terrible place to be. Being judged, criticized, treated like a mental patient or liar, discounted, called names, and abandoned, is added suffering and further cripples your ability to cope. Constantly finding myself at the end of my ability to manage life, and life notices and delves out a constant barrage of punishments brought on by not getting done the things that need to get done even when you want so desperately to achieve success in life like you so easily could before. So close, but so out of reach.
Wow you really named it🐱. I have had since 1989. Have had everything you mentioned and still do. You described my hell better than i could, have forgot some of it. Lot has come and gone but fatigue never ends. It causes lots of losses and too much time to think about it. Thanks for explaining to others.
Hi, I have ME and chronic pain, what can i do when someone's trying to help by trying to make you smile and you strain so much just to put on a pretend smile, and you feel sick, frustrated, and depressed :(
*****
Hi, thanks for your suggestion, i must tell you i've had a breakthrough that me and my husband have been working on for years with the source of my heavy mental health problems, since the breakthrough, the very next day after my final fight of schizophrenia icould see or feel no sign of ME xx i was soooo convinced it was neurological but turns out and proved my case was in fact psychological :) now for the first time in my life i'm living a nearly normallifestyle, just the pain remained (fybro)
*****
yeah, i'm living on vegan food at the minute, i'm helping out at a vegan cafe who also cater for people with gluten and dairy and nut allegries, it's not made much of a difference, i've had to stop helping out for a while, but still go in and get fed and get my dose of caffeine
I can smile now, i don't have any more ME symptoms, just the fibromyalgia, for the first time in my life i can actually hold myself up nice when i sit, i'm still strengthening and recovering and it's been two months since that breakthrough and getting up to walk, i'm going through the elimination process with my doc for4 a diagnosis for fibro, it's took ages and she keeps forgetting to send tests off
I've conquered my fibro at last, i was working on the positive mental responses and worked out the reasoning behind why they were so negative in the past until it's become my mainframe way of thinking, when i could peice everything together i had a long very painful migraine and when it eased, my fibro went with it, i hope this helps :)
Thanks, that's one of the most difficult things is when the body just "shuts down" like you say, and you can't work out why, or if it's going to be a short blip or more of a relapse. There's a new video I'm putting on here explaining about ME tomorrow!
I'm so sorry to hear that, being so ill with so much pain, ever since you were a toddler? That's really tough. I really do hope things will get better for you, don't lose hope.
I was looking for information about pacing myself as I've recently been having a relapse of my M.E and came across your videos. They are fantastic, incredibly and intelligently thought out. I'm proud of you Giles :-) You've been doing an amazing job! Well Done and Thank You for helping me! x p.s I was thinking to myself...Oh that place looks familiar...wait...IT IS FAMILIAR and then....wow! It's Giles!!! haha you should have seen my face!
Thank you, I hope at least some of your family and friends can try to understand and be supporting to you.
this video was perfect
while suffering from ME/CFS, my (gaslighter / narcissist / emotionally manipulative) parents told me it was all in my head and I was well.
Sorry to hear you've been so ill since the glandular fever. Really hoping things do get better for you again, and hopefully soon.
Thank you for this video! A lot of people don't understand me (& ME lolz). I stumbled across this video the other day & have been passing on this video as a way to bridge the gap between myself & those people in my life who just don't understand. You say it well. Thank you for saying what I can't quite convey. So far, with just this video, you've help me turn a friendship totally around. Thank you so much!
Oh & by the way, you have a very lovely voice & accent :)
Hod bless you all .pray every day for a break through.
I recently got diagnosed with ME, but I'm ill for many years already.
The severity of my illness fluctuates but there is no day going by without pain or fatigue.
Thank you for saying: "Be kind to yourself." Needed that.
I am really pleased to hear that you are now better! Candida infection in the digestive tract can often be a significant factor with M.E, but only a relatively few people with "chronic fatigue" recover only by treating that. Glad to hear you are doing so well though :)
Wow. Yes I remember being pretty much that ill too. Best wishes to you.
Please keep getting all the rest that you need, and I hope that you do start to get at least a little better soon.
Don't give up! I've had this now for about 20 years, and about 6 years ago it was so bad I wasn't able to get out of bed. My doctors and I didn't know what was going on. I have slowly but steadily improved after taking natural supplements. Look into supplements that support adrenal glands, mitochondria, fight yeast/mold infections, fight oxidative stress... It can take time, but you CAN improve, especially if you are young. Look into the Hunter-Hopkins Center in Charlotte, North Carolina USA.
The best information i ever seen!
Thanks! Had cfs for 20 years.
Thank you so much for this. It’s a cruel, cruel illness. To know I’m not alone in these feelings is worth so very much. Thank you.
This is possibly the best description of me/cfs I ever heard. I've had this condition for more than 60 years and I feel better knowing that at least one other person knows what a mystery it truly is and how disappointing it is to think you may be over it only to find that you're not.
Thank you SO MUCH for this WONDERFUL video!! I have not even told almost anyone that I know about my illness because there are no words to describe the suffering, and if you haven't experienced it, you can't believe the body could suffer so much and not die. I am house and bed-bound with severe ME and have been for years now, I have lost everything but my husband who is the only reason I am able to stay alive. I depend on him for everything now, and I used to be a competitive athlete.
Yes indeed - there are none so affected and afflicted and cursed as a M.E/CFS sufferer. Believe me I know!!!!
Thank you for posting. Your list does sound like the most depressing list in the whole wide world, but it really is all soooo accurate. Why are there still so many people/health establishments who just don't acknowledge the illness when there's so much evidence for its presence. Employers in the main also don't have any awareness of this condition, either, thinking it's just associated with a bit of tiredness. It's so frustrating when we're as far ahead as 2012.
after several videos I FINALLY see (in the title of your vid) what m.e. even stands for. I was beginning to think that nobody even knew! so thank you.
I am balling my eyes out because I'm feeling exactly how this men is describing the life with ME/CFS.
It's been 5 years. I lost everything including my self esteem. I'm alone 24/7, home bounded and most of the time in distress. I litterely went from "Super woman" to "zero woman".
Sending a big hug to everyone out there, living with this condition. 🙌✳️
So sorry to hear that you have been through so many painful and difficult things, Patricia. I do hope you know deep down how valuable and loved you really are. I know it is so hard to fight when we don't have any energy or strength of our own. God bless you.
Thank you for this. Meditation helps me a bit. keep going everyone x
I know, all of the huge loss feels devastating. He is listening, He sees and knows our pain, trust Him.
Thank you - so sorry to hear that you've got so ill - and when you were so sporty before. I did 3 videos trying to explain what we know (and what I think) about the cause/s. And I've just started to talk about ways to try and manage the disease and how some people are getting better from it too - I'll hopefully do more videos again soon! Rest (with some "exercise" or movement *within* your energy limits), and excellent food, are the best places to start. Wishing you all the best.
Your ME videos are a godsend for my friends, family and myself. Thank you for being such a noble warrior for us.
Extremely good points raised in this. I too suffer CFS/ME. To call it Chronic Fatigue Syndrome is like calling Parkinsons "Chronic shaking syndrome".
thanks for taking the time to make this video and share your insights of what its like to live with chronic fatique.
Thanks for being so brave to put this video out there. It’s difficult to hear how your day to day life is and how it’s changed but I hope that there will be peace in it somewhere for you.
@GetWellFromME Thank you for your kind words. It is so good to hear other people's stories and realise that we am not alone in this battle. I used to get very bitter about ME - when I had the energy for bitterness, that is! But I have come to realise that in our enforced absence from the world, we have been given some very special gifts. I wonder if you know what I mean?
Absolutely outstanding in every way.I agree with what you say about friendships- I have lost many- even my own parents believe it is tiredness. I was lucky- I had married and given birth to 4 wonderful children before I became ill- but what about all the young people yet to start out on life.I had a career to lose- yes but at least I had it first.This illness steals so much from so many in the spring of their lives. A superb video- thank you.xx
Thank you. It's a long time, isn't it? I really do hope that you have good family and friends around you who will really be able to understand - and also hope that you might be able to start getting at least a bit better again. Best wishes
thanks for show the world what ME is like im currently 18 yrs old i developed ME at the age of 11 and have been wheel chair bound since, but my ME never gets betterand thier nothing anyone can do to help me, but the worst of it i havent left home for more than 4 years, i can no longer eat i have a tube in my stomach to fed my self i am mostly bed bound and currently been on an iv drip givin me morphine just ot cope with the pain
no friends
if only thier was a poper way of treating it !!
Thank you very much for uploading this. I often try to "forget" how much things have changed in my life and what I go through day to day. I even find myself apologising for it. But I shouldn't, and this has reminded me that I shouldn't. Thanks :)
Thank you for taking the trouble to make this excellent video. There is so much ignorance surrounding the illness and people simply do not understand what it is like, or how unpredictable it can be. I am fortunate in having very good support from family and the professionals, but I have lost friends through it, and my life has been severely curtailed.
I understand.. :)
Phew this made me cry. This is one of the first M,E videos I've watched; I find that when I do a youtube search I end up not wanting to watch one as it depresses me. I've had M.E since I was 12, I am now 23 with perhaps a slight improvement. I feel like my life has been stolen from me without anyone but my parents noticing. Doctors told me it was all in my head. I believed them. I felt vindicated watching this, thank you.
I am an orthodox Muslim. I loved the train analogy because this is how I described it.
I really hate having ME/chronic fatigue syndrome. I was diagnosed with it around a year ago yet I believe I had it for much longer. I have been taken out of college and my education is severely disrupted and the teachers/therapists have been absolutely useless and unsympathetic. Now Im on anti depressants and having another shot at college yet Im still sick and struggling to wake up early each morning. Im just glad there are other people online that I can talk to about this :)
Everything you said is spot on........where are those who can understand this illness? I can't get anyone to understand. Every day is one to struggle through, (yes, with some exceptions). People say to me: "oh, just get out and live a little!!" HA! Well, I do, in ONLY the little things matter now, like being able to make my meals and do what I have to do. That's sometimes all I ask in any given day. Thank you, sir.
Thank you, you pretty much nailed all my symptoms! Will send on to friends and family.
i dont know your name , but i thank you deeply for this video , i shouldnt be thanking u 4 having something so disturbing in ur life i know , but i thank u for makin me feel not so lonely 2day , my heart goes out to u completely , uv explained this in such perfect detail , i have ME to and i know its one of the most lonely horrible things u can experience ,, but just like i am not alone through watching this video , u are not either ,i will pray 4 u that ur condition gets better,may god bless u
This is excellent, I havent watched them all yet...but this is really good. I especially like your positive message at the end, I think we all need to hear this, and it does seem the best support comes from others with m.e. [and family,hopefully] but only others with it, truly "get" "it"