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

[Bloodekuscrub]

Thank you for this Video. It made me cry so much :') because you were describing my life, though I doubt I have it as severe.

[GetWellFromME]

@Bloodekuscrub Thank you - I never like to make anyone cry (!), but it is some consolation when we find we're not the only ones going through this horrible illness :)

[KungZoo]

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.

[GetWellFromME]

@KungZoo Thank you. Yes, it's awful that very few people take ME seriously as the devastating neurological illness that it is. I just hope that with more awareness, things might be just starting to change with more understanding, and even research!

[telemetry9]

great to see this.

[TheFletch827]

I think overall this illness convinces you that you're dying, and often I feel like my brain is rotting. Not all patients can sleep, I am one of them. There is some malfunction in the brain when it comes to sleep and some can sleep other patients cannot, lying in bed for hours on end and the brain won't shut off although experiencing severe sleepiness and fatigue. Thank-you for bringing awareness. We need a answers, we need help. Our dreams, hopes, accomplishments, passions, all stripped away.

[GetWellFromME]

@TheFletch827 Yes not being able to sleep, even when you're desperately exhausted - or not sleeping at the right times for the body - is very common with ME and very difficult. There are some treatments for sleep disturbances with ME which can help some people sometimes, check out Dr Sarah Myhill's website and search for "sleep" in case you can find any useful info to help you there. Yes, years vanish, it's horrible.

[thewoopwoop1000]

WOW this is the MOST touching thing i have ever heard in my life...I actually feel lucky i don't have ME but to all the people who do. Stay Strong! You are cared about.

[GetWellFromME]

@thewoopwoop1000 Thank you so much, appreciate your support! :)

[39rebecca]

thank this video is very moving as my boyfreind has it i spread the word wen ever i can as people need to be told about this

[GetWellFromME]

@39rebecca Thank you, and I'm sure he must appreciate all of your support and care.

[Nekochan093]

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 :)

[GetWellFromME]

@Nekochan093 Sorry to hear you have had such bad "support" (or lack of it), by the sound of it. It really is important not to push yourself, but to find the rest your body is crying out for, and hopefully find some treatments (or just time) that might help you to recover at least a little better. Hope you do start to feel better again, and hopefully soon.

[Nekochan093]

@GetWellFromME Thank you :) I shall try my best to rest more often and take better care of myself. Thank you for all your support and your helpful videos ^^

[scoopoutwater2]

This video made me weep because, for the first time, my life has been described to a "T", with some level of compassion

[GetWellFromME]

@scoopoutwater2 Thank you ... I'm not psychic (!) but there are a lot of us who have silently gone through all of this, you're not alone.

[ceahorse56]

Jan 4th 1990 I wake up with the flu, or so I thought, stiffed neck horrid HA, sore throat & fever. I rarely called out sick but missed 4 days of work that week. By April I had to quit my job, I spend the next year in bed. It settle down until 2003 when I had a relapse. I spend months in bed and even had to rent a wheel chair. Doctor after doctor test after test AGAIN and nothing showed up. I even went to a therapist. Left disable can no longer work. It's a full time job to ward off a flare!

[GetWellFromME]

@ceahorse56 Sorry to hear you've been so ill, and more than once. I do find it interesting that the stiff neck symptom seems to keep coming up again and again with people who have ME... I do hope you will be on the road to recovery again soon, however gently (but the sooner the better!!), sending you best wishes :)

[exitfibro]

Causal healing, not ‘ another treatment’ is possible by surgery! You don`t have to live with this diseas. They(FMS, ME,CRPS ,CFS) are all caused by neuro-entrapment! It is fysic not in your mind!

It is a lie, sponsored by the farmaceutical industries that you must learn to live with it! Because this disease can imitate more than 30 other diseas!

Wake up. No false hope anymore. It is time for fibro-leaks

SURGERY IS THE CAUSAL CURE

It has been proven without any doubt!

[GetWellFromME]

@exitfibro Thank you, I do know of some people with fibromyalgia and ME who have been partly helped by surgery as you suggest, but haven't yet seen it as the causal cure - I'll be interested to read more about the link you gave. Best wishes to you!

[smay727]

Thank you soooo much sor doing this!!!!!

[GetWellFromME]

@smay727 Thank you! :)

[GetWellFromME]

@ChronicFatigueSyn Thank you!

[mandymay22]

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.

[GetWellFromME]

@mandymay22 Hi, thank you, and sorry to hear you've had such a bad time with it - I do think I know what you mean, although fortunately I guess I had finished school and uni before I got ill. ME certainly isn't "all in the head", it's terrible that some doctors can still say that... It's great if you have improved a bit, I really do hope that you will be able to look forward to your health getting better again :)

[Musyn]

Your ME videos are a godsend for my friends, family and myself. Thank you for being such a noble warrior for us.

[GetWellFromME]

@Musyn Thank you, really appreciate your comment :)

[nkalou]

Thank you very much for all of us..You are doing a very good thing.I consider you my brother as we are both ill.Sometimes when you are on the "same boat" with someone he or she becomes your family..

[GetWellFromME]

@nkalou Thank you, and yes I know what you mean, sending you best wishes :)

[zuniga6412]

Wow...i have never heard of this before. What a horrible situation.

[GetWellFromME]

@zuniga6412 Yes it really is a horrible illness, affecting tens of thousands in the UK, and probably around a quarter of a million in the UK with some sort of "chronic fatigue syndrome" - and millions around the world...

[zuniga6412]

@GetWellFromME Is this something that has been around for many years?

[GetWellFromME]

@zuniga6412 Hi, yes see my other video about ME, "the real facts"... ME was first recognised in the 1930s but may very well have been around a lot longer than that? But it does seem to have been getting more widespread since the 1950s and especially more recently.

[shoshiplatypus]

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.

[GetWellFromME]

@shoshiplatypus Thank you. Sorry to hear you've been so ill too, glad to hear you've had good support from your family and professionals though. Best wishes to you! :)

[lifeonerth]

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.

[GetWellFromME]

@lifeonerth Thank you. So sorry to hear that you're so ill with ME and bed bound for so long. Even if people could try to understand a little bit of what people with severe ME go through, that would be something good. We still of course hope for treatments and even cures that can help everyone.

[jlcmsw]

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.

[GetWellFromME]

@jlcmsw Thank you... I really do hope your family and friends and doctors will be able to help and support you more, and understand ME better - if only it were a case of us "getting over it"... Best wishes to you :)

[johnlowestoft]

This Video is very good at describing how Ive felt during the 20 years ive had severe M.E. ( mainly bedroom/housebound during these years) Thank you very much. I will have to look at the others in the series say one a day.

[GetWellFromME]

@johnlowestoft Thank you, I'm glad you've found it helpful to relate to the video, but of course sorry that anyone else does go through this too.

[imawakebutsleeping]

thank you so much for putting into words what its like living hour after hour with this dreadful illness.l have no idea how we cope but we do.

[GetWellFromME]

@imawakebutsleeping Thank you, yes it is horrible, but keep hanging in there.

[chronicallyfatigued]

@GetWellFromME thank you so much! :)

[chronicallyfatigued]

Brilliant video! I am a young sufferer of this awful debilitating illness, and currently have 2 videos on my channel to raise awareness. I would be so grateful if you took a look! Well done again on your video! :)

[GetWellFromME]

@chronicallyfatigued Thank you so much! Sorry you're going through it too, I'll have a look at your vids! (If I don't get time then please remind me again later!!) :)

[chronicallyfatigued]

@GetWellFromME thanks very much :)

[karmakomodia]

Wonderful series of Vids. I have M.E. I work hard at my health and keep researching for answers... Worst advice I ever got was that my illness was due to 'spiritual problems' and the Dr. gave me a web-site to a Televangelist who has Home COMMUNION KITS ( for a donation of course.) UH. no offense to those who honor such traditions.. No, I did not ever go back nor did I order the kit.

[GetWellFromME]

@karmakomodia Thank you, glad you're finding the vids OK! Sorry that doctor seemed to say that. Having ME is bad enough without people appearing to blame us for it! Having ME is definitely NOT ever any sort of punishment from God for our sins or anything like that at all. And sadly most televangelists are con artists. God would NEVER ask anyone to send money for healing!! The Bible, and trusting Jesus, are completely free for anyone who wants to - no offence to anyone who holds other beliefs :)

[mcclurebaker1]

thank you for posting this. People need to realise it is debiliating and real!!!

[GetWellFromME]

@mcclurebaker1 Definitely! Thank you for your comment. ME is definitely NOT imagined, or "wrong thinking about being ill". Best wishes to you.

[alovelyheart615]

I hope all of you are feeling better, it can take time!  ~*~ Do something to make your heart sing ~*~ ~*~ Laugh your heart out, Dance in the rain, Cherish each precious moment ~*~

[GetWellFromME]

@alovelyheart615 Thank you for your positive thoughts! :)

[GetWellFromME]

@IhopeIrecover I really do sympathise, it is horrible to feel that the years are slipping away. But I hope that you do recover too. Best wishes to you.

[ruthamyallan1]

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.

[GetWellFromME]

@ruthamyallan1 So sorry to hear you've been so ill for so long. I hope you enjoy / have enjoyed your holiday, and not been too exhausted or felt that you've missed out too much, I know it's difficult.

[ruthamyallan1]

@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?

[GetWellFromME]

@ruthamyallan1 I think I do. I wouldn't wish this on anyone at all, and in some ways I hate that I've "lost" well over a decade of my "life" to the illness. But at the same time, I've learnt such important things deep down that I could never have learnt from books, and in a way the time doesn't mean anything (although that's easier said than really believed, when you see the world going on around without us).

[jessical1969]

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"

[GetWellFromME]

@jessical1969 Thank you... yes, it seems that no one else can really understand it unless they have had it ... or maybe unless they have lived for at least a week (or several months) under the same roof as someone who has... but it's still great to have support from friends and family too when you can :)

[alovelyheart615]

I cried as I related to this video, it describes my horrific summer also smothered in unreal pain.

[GetWellFromME]

@alovelyheart615 Sorry you had such a bad time with it, best wishes to you.

[AmyVanderlynn]

-2-

But I know it wont help. I have to make EVERYTHING in slowmotion to use this tiny piece of energy I have. But I will fight for my rights.

[GetWellFromME]

@AmyVanderlynn Hang in there Amy, having ME certainly doesn't mean you're crazy. Don't try to do things that you're not able to yet, the most important thing is to rest and let your body have the energy it needs to give yourself the best chance of getting better as soon as you can. Rest, and take care :)

[AmyVanderlynn]

It started in 2009 with a flu. First time I was able to understand and go to a doctor was in december 2010. Since that date my life changed in so many way. Actually I was only lying in bed for hours and I didnt made so much today. Just a few telephone calls and a few letters. I still feel like..I dont want to say that word here..My mum and my granny understand whats going on, my dad said Im totally crazy I just need a new boyfriend and a job and Ill be ok again.

[deemdeex]

scary i honestly thought i was the only one going through this. i completly get everything that is said in this video. thankyou

[GetWellFromME]

@deemdeex You're really not alone, me and an estimated quarter of a million people in the UK, and millions across the world, all suffering with this. Best wishes to you

[tansyobryant]

Never in my life have I heard someone speak so clearly and intelligently about ME. This is so empowering.

[GetWellFromME]

@tansyobryant Thank you so much, glad you find it helpful :)

[Afrikitty]

I fell ill with this disease in July, 1986. My life changed overnight and it took doctors 4 years to find the problem. One doctor got me to where I was living a relatively normal life. However, the setbacks are brutal!

I fought this disease tooth and nail for all these years. I lost many friends - I lost my family. For me, that is ten times worse than any of the symptoms of this disease. I have had them all to a greater or lesser degree. I will NEVER let this crap get me down - SO HELP ME GOD!

[GetWellFromME]

@Afrikitty Thank you for your positive encouragement ... it's horrible when friends and family don't stick by you. Feel free to share briefly how the doctor helped you back to a "relatively normal life" if you'd like to, thanks! :)

[LollypopLittleVoice]

I cried watching this and I think I forget sometimes that others like me are out there just trying to get through the day. Having ME/CFS is like someone pressing PAUSE on your life, thank you for being brave enough to get these important messages out to sufferers and carers, I hope and wish for a cure but in the mean time some understanding goes a long way.

[GetWellFromME]

@LollypopLittleVoice Thank you, yes I remember the Christmas after I'd been ill for 1 year, I wrote in people's Christmas cards that I felt like a pause button had been pressed on my life but I was looking forward to getting back to work etc. I never could have thought I could have stayed so ill for so long. Yes I certainly hope and wish for a cure too. But thankfully I am now a lot better than I was, although certainly not fully recovered - there is hope.

[finette4444]

Thank you for this and your other video blogs. You present the illness and how many of us feel clearly and very well and that others can understand. Thank you so much

[GetWellFromME]

But I do know many many people who have had genuine ME, sometimes severe, who have made good and even "full" recoveries - sometimes after only a few months, sometimes after many, many years. There are also many many people who are not getting better from this awful illness, through absolutely no fault of their own. So we continue to hope for more research, better understanding, and effective models for treatment and even cure.

[GetWellFromME]

It is true ... if someone gets ill, other people often seem to have it fixed in their minds that they either get better (after a few days or weeks), or they gradually deteriorate or die. The concept of actually being ill for a long time - sometimes very long time - especially with fluctuating health and energy (good and bad days / weeks, relapses), seems much more difficult to accept.

[princessmissy50]

Wonderful!! People understand getting well from a virus or the flu. They don't understand that *we will NEVER get well* and will live 30, 40, 50, 60 or more years with this horrible disease until a cure is found!

[BritishSnail]

Dearest Jesus, thank you so much for my experience of M.E. which has brought me so much closer to You. I am truly thankful for my many, many blessings. Amen

[BritishSnail]

Hope is very important. My faith has grown huge because Jesus loves the sick, weak and poor so very much indeed. When everything from this life is stripped away, there He stands in all of His shining glory....... "faithful". I have so much now in Him, that I am grateful to have M.E. because it has brought me much, much closer to our Lord Jesus and I now understand that faith is 'everything'. When we offer our sufferings up to God in Christ our Lord, they are returned to us as blessings. Amen

[BritishSnail]

When I was most ill, in bed for 6 months (twice actually - the second relapse is the one we don't recover from) I was not lonely. I was far, far too ill to be lonely.

[Mariacanzer]

@BritishSnail yup people wonder why I don't socialise anymore- Well I don't like loud noise, being in company for more than an hour (thats a good day) being far from the house (in case i start feeling sick) I cannot plan ahead because i never know if i willl be fully awake of a day or not- argh! I second the being too tired to be lonely my brain doesn't work fast enough to notice the lack of people!

[alovelyheart615]

@Mariacanzer I can relate to everything you've said and I hope you soon feel better soon, I have. Keep the faith

[BritishSnail]

This is a BRILLIANT video. Well done and thank you.

I've never thought of my limbs as feeling hollow. Detached, a dead weight.

[MrBlueVeins]

Thank you so much. I have had ME for so many years and really really hating living my life in pain. And so many of my friends just DO NOT UNDERSTAND! They say, oh you dont look sick, or -are you sure you have it ? Or but you're so full of energy. Or you look allright to me. And they don't realise I have only come out for one day a week and then spend the rest of the week in bed. THANK YOU

[alovelyheart615]

@MrBlueVeins I can relate about getting out, but in my case, after being confined usually to my room for over a year, I got out once or twice a week for a couple weeks, so my husband assumed I was well. But I am not, I struggle with everything I do and have been blessed lately with less pain so I can go out on occasion. I hope you feel better soon. : )

[GetWellFromME]

@alovelyheart615 Good to hear you are getting a little bit better, I hope you keep getting better! Best wishes

[taintedluvx]

Thank you so much for these fantastic videos that I can pass onto friends/family members who do not understand even after being ill since the age of 11 (I'm now 22). Thank you for doing it so well.

[GloomyCait]

This video is perfect, thank-you. It's open a lot of eyes.

[GetWellFromME]

Thank you! I so wish it weren't true - so much easier to "just be a bit tired"... It's horrible at any time of life, but I do definitely understand what you mean, @poppiana

[MsSqueza]

I know youre pain, I live it every day.

Hugs to you and all the others!

[poppiana]

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

[ATNYAZ]

Thank you

[raynsings4u]

Thank you very much. It is difficult to put words to this disease, but you have done it so any normal person can understand it.

[renethorpe]

great video so sadly true

[GetWellFromME]

Thank you all! And we don't have to be sorry for being ourselves as we go through this horrible illness. :)

[theinnerlight87]

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 :)

[zzirf4551]

brilliant vid

[darkintheglow]

Beautifully said. Thank you.

[angelsolace]

Thanks so much, you explained it well.

[ironbith]

This describes the illness very well. TY!

[xjywq90]

This is an excellent description!

[Wokstation]

Extremely good points raised in this. I too suffer CFS/ME. To call it Chronic Fatigue Syndrome is like calling Parkinsons "Chronic shaking syndrome".

[TheLibra2767]

Brilliant as always,informative for those who know nothing about it,comforting for those who have. ;)

[GetWellFromME]

@TheLibra2767 Thank you! :)