ITV show gets it wrong on life prospects for M.E. sufferers | 17 April 2015

April 17, 2015


The ME Association has received a number of complaints today about an item on ‘This Morning' in which one of your contributors – Denise Robertson – made some comments relating to ME/myalgic encephalomyelitis.

I understand that a caller to the programme was informed by Denise that: “You must remember that ME doesn't last forever”

Whilst I can understand that this was probably meant to be reassuring and well meaning, the information is not factually correct.

Sadly, the prognosis for many adults with ME/CFS, especially when they have been ill for several years and not made any significant progress even with good management is poor and, as the Chief Medical Officer's Report on ME/CFS noted in the section on Prognosis: ‘Full recovery after symptoms persist for more than five years is rare'

While some some people with ME do improve over the course of time, it is only a small minority that return to full normal health.

In addition, it should be noted that around 25% of people with ME/CFS are severely affected at some point in their illness – meaning they are wheelchair-bound, housebound or bed-bound, and may even have to be tube fed.

Not surprisingly, this illness also has a devastating effect on quality of life and research studies have repeatedly found that this can be even worse than for people suffering from many other chronic diseases, including cancer (reference: Nacul L et l, BMC Medicine, 2011, 9, 91).

I would be grateful if you could pass this information to Denise and you clearly need to correct this misinformation on the programme on Monday.

Dr Charles Shepherd
Hon Medical Adviser, ME Association

45 thoughts on “ITV show gets it wrong on life prospects for M.E. sufferers | 17 April 2015”

  1. Please tell this to the cheif medical advisor who keeps refusing me my RAF pension being paid early due to ill health. Year after year on the insistence that “Chronic fatigue syndrome is not lifelong and you are likely to recover from it before retirement age”, they have refused to pay out for the past three years. I can only re-apply once a year.

    I have a diagnosis of Myalgic Encephalomyelitis, not a diagnosis of Chronic Fatigue Syndrome. I have lived with both severe and moderate relapses since I was just 19 years old and have been ill for 18 years, almost half my life and all of my adult life. After exhausting all treatment and being made severely affected by CBT, GET and pain management, I now simply manage it myself with pacing and rest. I no longer go to the doctor unless something new or a cause for concern comes up as the doctors do nothing and know nothing about ME and only want to send me to a CFS clinic for more CBT and GET. Naturally I refuse.

    I am on high rate lifelong DLA and Mobility and classed as a 60% disability level, unemployable and invalid by the Service Personnel and Veterans Agency and all my health problems have been accepted by the SPVA as caused by and attributable to my RAF service. Despite all this, the chief medical advisor for the pension continues to refuse me my pension benefits that I worked and served my country for.

    After almost ten years of fighting the DWP, SPVA and having numerous medicals and WCA, as well as a 3.5 hour tribunal hearing, while laid in my bed suffering severe ME relapse (wearing dark sunglasses throughout), five people sat around the foot of my bed, I won and was awarded everything, DLA, support group ESA (which I no longer claim) and compensation by way of a war pension. Yet soon, thanks to this Tory govenment, I am going to be forced to give up my lifelong DLA award and be subjected to the repetetive medicals farce which is PIP, ran by our beloved caring ATOS. That is ATOS who already wrote false medical reports about me and using their favourite biopsychosocial nonsense to try to dismiss my claims and deny me benefits.

    This is all a disgrace. Just when I thought I could relax and learn to cope and live with my illness as best I can and try to make some semblance of a life, knowing I have some financial stability and security, they now intend to pull the rug from under me and subject me to the same stress and harassment over and over again for the rest of my life and this will only make my health worsen. So much for honouring the military covenant and making sure our veterans are well looked after.

    I fully expect that I will live the rest of my life with ME unless biomedical research continues and gets the proper funding required to make a breakthrough that would change the lives of PWME. The worst of it is that I am better off than many who live with ME and others have far worse stories to tell about the abuse, mistreatment and ignorance they have been subjected to.

    It doesn’t help one bit when incorrect, misinformed or ignorant and untrained doctors go on TV, radio or write in newspapers about subjects or particular diseases as though they are stating factual information, when clearly they know little to nothing about the subject. This is what the Psychological lobby, PACE trial, NICE guidelines and GP reference literature (which is factually incorrect) has done. I’m glad to read that you have informed ‘This Morning’ and Denise Robertson of her lack of knowledge and incorrect advice but whether they will infact correct the mistake on TV is another matter. I hope they do.

    I’m going to print this article and include it in my application next time I apply for my pension!

  2. I believe Ms Robertson was correct in saying that ME doesn’t last forever.

    Whilst that may not be the case for everyone with the condition, I know of three friends who have made full and effective recovery from ME and now lead a ‘normal’ healthy and active lifestyle.

    Their recovery was made possible by a combination of appropriate and necessary medication, pacing, nutrition changes and relaxation/meditation.

    I feel it’s just as wrong to imply that you won’t get well from ME as to say that you will.

    I do find this site and it’s attitudes very negative.

      1. You’re welcome James.
        I feel that many people are only too quick to jump on the bandwagon and resort to negativity and ‘poor me’ syndrome.
        There is light at the end of the tunnel for a lot of people, I don’t say all but with this attitude it’s going to be a long, hard ‘recovery’ to at least a relatively decent quality of life.
        Tablets are not the only way!!
        Enjoy the weekend James and the wonderful weather we have today.

        1. 3 people out of 250,000 in Uk alone, wow! You are really onto something! The real figures are about 20% may go into remission – no-one recovers and when it comes back it is worse hat the first time. 25% are severely affected for life and the rest fall between the two. In 25 years I have known 5 people “recover” and 3 are now completely bedbound. Being realistic is not being negative. You have no right to talk about our attitude unless you know us personally. You have no idea the money and time we have wasted chasing snake-oil salesmen. You have no idea how much we want to get better. Research has shown that about 40% of people are mis-diagnosed with ME so your 3 probably never had it in the first place. “Poor me syndrome”??? How dare you. The hundreds of people I know with ME are some of the bravest people I know and they all put their best face to the world, hiding the pain and unrelenting illness they feel all the time. My son and I live alone with precious little help, he’s been ill for 14 years and is now worse than me. Most days we are not well enough to cook. We laugh every day that we can and always look to the future with hope so don’t you dare tell me we have a poor attitude. Walk in my shoes Megrawcliffe. A US doctor stated that from her patients she has observed that ME is worse than AIDS two months before death, end stage heart disease and cancer.

        2. Unless you are a sufferer yourself I would keep my comments to myself if I was you!
          Knowing 3 “friends” who all “improved” is nothing like suffering the disease yourself.
          As for the “poor me” comment, that is just sad! So someone explaining about their illness is whining? I hope you’ll always stay healthy!

      2. Apologies Stephen, I was distracted reading James’ post, hence the name mix-up
        Comment below is addressed to you.

        Enjoy x

    1. Your comment, “Whilst that may not be the case for everyone with the condition.” is the primary reason your opinions are damaging. Your comments imply that all sufferers of ME are negative and “poor me” personalities and all ME sufferers can, if only they changes mental attitude, all be cured.

      The only accuracy is that it is not the case for everyone and so it should be acknowledged that many are negative and feel defeated and others (like my own daughter who has had it for 15 years at time of writing, are incredibly positive and keep bouncing back from relapse to relapse with hope that each small recovery will be permanent.

      I strongly suspect that many who claim to have “recovered”, did not actually have the full blown version of ME in the first place, and with it being such a variable disease, it is too easy for those in the fortunate position of now having a normal life, to judge how others have “failed” to follow advice without considering that they may actually have tried such advice, but it has not worked in their case.

      Any educated person who knows about depression (As an analogy) will know that the worst thing to say to a sufferer, is that they can “Pull their socks up”.

      Perhaps if you are every unfortunate enough to get breast cancer, a cancer survivor will not say to you, that you too could recover if are positive thinking and eat healthily, and that it is all your fault if you do not recover as they did?

      I am so proud of my daughter and her positive approach to life and her persistence and trying to achieve a degree, even though over 50% of her life is spent recovering from days she manages to be “normal” and these days are not planned but just thrown at her when she then sleeps for all night, all day, then all night again. So much for choice and mental attitude in her body doing this, and that the myth of graded exercise is one of the most destructive of all.

    2. Wow, 3 people! I’m sure that the other 250,000 people in the UK with M E will be chuffed to bits to know that there are 3people who have recovered.
      This illness is far from a “poor me syndrome” that is been thrown around by responses on this page. Many of us look to each day for the positives that come with it. Be that been a beautiful clear blue sky outside of our windows,or just simply waking up each morning!
      Denise’s response was horrifying to the M E community as many of us struggle to be taken seriously by our GP’s,other health care professionals and even our families!
      More understanding of this condition is needed!

    3. Whilst it is good to hear of people recovering it is important that people living with ME have realistic attitudes based on science and statistics. It is not wrong to state the outcomes as Charles has done in his letter. I wonder what you hope to get from this site? Many people, studies I have read indicate at least 25%, are very severely disabled and some people die – I attended one funeral and know of two others personally. To say to people on a TV show, however well meaning, that ME does not last forever is simply inaccurate. Personally, cutting out gluten and making some other dietary changes played a key role in my return to work as well as being on a drug trial for ME with Galantamine Hydrobromide for a few years. But I have been a n electric wheelchair user since 1997 and I am still severely disabled and have to spend a lot of time horizontal when I am not working, I need to employ personal assistants to allow me to live independently. The current government seems hell bent on cuts affecting disabled people and to be over optimistic about outcomes is not helpful for campaigning and gaining resources for people to stay alive and independent. There is a difference between realism and negativity.

  3. @megrawcliffe

    so what if you have known three friends that have made a full recovery?

    , maybe they didnt have genuine ME? also you havent conducted a large scale longitudinal study, and you cannot extrapolate from three cases

    you say you find it wrong to say that people dont get better from ME, well then please continue living in fairytale land.

    seeing as though you find the MEA site so negative, what exactly are you doing that is so positive, to counter the plight of people with ME?

    the MEA have never been in the business of peddling false hope,
    They have always been cautiously optimistic but at the same time had there feet on the ground at all times.

    but clearly this does not apply to you

    they are constructive in their actions and initiatives and have been battling hard on multiple fronts to improve the lot of those with this dreadful affliction

    to conclude, madam, i think your statement is negative in the sense that it trivialises the seriousness of this illness, which is often profoundly debilitating.

    i can only conclude that you have come here from some other site, in order to create mischief

    jeremy bearman

    1. Margot

      Well stop the clock, move forwards from this point, look for positives in your life, I have no doubt there are many.

      Have a beautiful weekend.

  4. Jeremy Bearman

    No, I don’t come here to start mischief as you put it, merely to inject a tot of reality into the proceedings as I put above, it’s often ‘poor me’ syndrome where people walk along with their head down, never looking up, never appreciating the good and positive in life, constantly looking for negatives. There is a beautiful world out there, inject some positivity into your life, look at nurtrition (food is a centuries old medicine), just get some sun on your skin, vitamin D does wonders. You have so much to be grateful for and gratitude pays dividends.

    Wishing you a good weekend.

    1. I am really confused by your purpose here. Are you an ME sufferer? What exactly is your interest in posting your opinion on this topic? To move from opinion to fact I would like to quote the best recent research which places median full recovery rates taken from 12 global studies as being at 6%. Improvement comes in at a much more encouraging 39% although a return to work is around 30%. So you can see from data based on properly monitored research, as opposed to anecdotal evidence, that Denise Roberts was not being accurate when she made her comments. ME is baffling and frustrating. The symptoms are extremely debilitating but they also fluctuate. It is also the ultimate ‘invisible disability’ and seems to be the only chronic condition where people seem to think it’s ok to describe it as being a ‘poor me’ condition and offer ‘helpful’ advice on how to cope. I have had this condition for 5 years now and one of the toughest things for me has been to come to terms with how limited my previously full and energetic life has become. I previously held a very highly paid and senior position in a blue chip company, swam at competition level and had an active family life with my two children. My life has now changed beyond all recognition – I can no longer work at the level I used to, my exercise habits have had to become much more modest and my children have to live with the fact that I cannot always do what I would like to with them. Contrary to your characterisation of those of us who continue to suffer with ME I am actually an extremely positive person and feel that the things I have lost as a consequence of the illness have been replaced by other things. I may have money worries but I am out of the rat race. My hard core swimming training has been replaced by daily walks with my dogs but I appreciate the joy of witnessing the seasons going by and the headspace getting outside offers me. I have learned mindfulness and meditation and am looking to gain teaching qualifications in both, so I can pass the benefits on to others. My diet is pretty much as good as it can be – I don’t drink alcohol, I don’t eat sugar, I have very limited caffeine intake (hey, no one’s perfect) and I eat abundant fresh fruit and vegetables – so in so many ways I am running a much cleaner machine but… I am currently in the midst of a major relapse and have been all but bed bound for about 6 weeks now. I still leave the house early mornings with the dogs (I’m an early morning energy person) because I believe in the importance of all the strategies you listed and that taking an energy hit later is worth the mental equilibrium I gain from getting outside. And yet I am still ill in bed. PLEASE do not be as foolish or as patronising to me or my fellow sufferers as to suggest that employing these tactics will provide a panacea and voila, normality restored. They DO help to manage the quality of our lives within the context of the condition and I believe strongly that IF I am to have any hope of full recovery this is the way to go about things but I also have to accept that I MAY never recover and I have to make my peace with that, which I do on a daily basis. Being told that the only obstruction to recovery is a poor attitude or a failure to do the right thing is simply cruel.

    2. Some more ‘reality’ then: since abx my head’s been exploding for 6 months, making even poor me scared and aware of how serious this truly is, am 99% sure when this is over I’ll be well and in the mean time stick the advice where you won’t get any vitamine D 😉

    3. Attitudes like this are exactly why this illness is so misunderstood. I belong to several online support groups (I am often too ill to go to the local support group) and the attitude in them is generally one of positivity. Despite what you say (and how many times have I heard the ‘Oh I had a friend who had M.E. and got better’ line, they probably didn’t have M.E. but the oft misdiagnosed CFS) the prognosis for people with long term M.E. is poor. We know that and because of that we try to live our lives the best we can. People with M.E. tend to be ‘doers’ not people who go around with their heads down saying ‘poor me;. However from time to time they might have a day when they do write or talk about how bad it is. It is bad. I’ll bet if you have a bout of flu you have a moan. Well imagine having a bad bout of flu every day for the last 15 years? People get fed up of asking how you are, you’re always ill, it’s getting boring, yet you feel just as ill as when you first got the flu, it’s not different because it’s fifteen years later.

      That doesn’t mean we sit back and moan (like people with flu often do). We only have one life so we get on with it. Since I got ill I’ve won business awards, photography awards, I’ve written numerous articles that have been published and raised many thousands for charity. Oh yes, I can see it coming now, ‘if you’re that ill, how come you can do all that’? We can’t win can we? We damned if we do and damned if we don’t. We either get accused of being malingerers with a bad attitude or we can’t be ill because we do stuff. I do the things I do despite my illness and pain. I am luckier than some though, I’m not bed bound. How do you suggest a bed bound M.E. patient who is also being tube fed gets out for that vitamin D?

      I am grateful. I was in the garden yesterday trying to photograph some water droplets. They were quite low down and I couldn’t manage it, it was hurting me and I ended up gasping and in pain. I was frustrated and had to go to the house to recover. On my way I gave myself a pep talk about how at least I could walk in my garden and maybe I should try to photograph more manageable things in future, water droplets on the branches of a tree for example. That’s how I live my life, if I can’t do one thing, I try something else I can do. That’s positivity.

      On the subject of nutrition. Why are you assuming we have bad diets? I agree you are what you eat. Diet can reverse many diseases such as certain types of heart disease, type 2 diabetes etc. In fact I was diagnosed with type 2 diabetes two years ago and the diagnosis was sudden as my sugar levels peaked at 23 and I was rushed to hospital where I nearly died. Rather shocked by the whole thing I looked at my diet, made some changes and within four months had brought my sugar levels down to 6 where they stay, stablilised. I had started out on injections and pills four times a day and now I don’t take any meds for the diabetes. Please don’t assume we’re stupid and can’t help ourselves. In the case of M.E. diet will only help with general sense of wellbeing, it won’t cure.

  5. I’ve had ME since I was 21. However following a major relapse in my early thirties, which left me bedbound for a year, the ME had now developed into a neurological & very disabling illness, which as a young mum, was truly devastating. My point is, is that ME is an illness which does not have a level playing field.

    Those who talk of full recovery being the ‘normal’ are misinformed. For many of us, this is not our story & that’s not pessimism, it’s the reality that many of us have had to accept in our lives.

    I’m now in my mid-forties, & trying to come to terms with my eldest daughter’s recent diagnosis of ME.

    It’s the ‘drip drip’ effect of misinformation about ME, that makes my life & now my daughters that bit harder.

  6. Thank you James and Sally. ME is still an unknown quantity and 50% of patients diagnosed with ME or many of it’s other names are actually misdiagnosed. They do not have ME at all. It is therefore impossible to say whether different people will get better as true ME patients do not usually recover.

    Having ME myself and 2 daughters with ME I find the ME association excellent in it’s interpretations of the information put into the media and rightly criticise any comments, which are false. We want the truth known by the public.
    Enjoy your life Megrawcliffe while you can.
    We just keep trying.

  7. It is good news when anyone recovers from longterm illness but sadly Megrawcliffe is demonstrating a basic lack of understanding of ME by his/her cavalier attitude. This is of course what happens when criteria are diluted and illnesses conflated and ME is misdiagnosed.

  8. I’ve had ME for 20 years and it has been diagnosed on three occasions by experts in the field in London and Oxford, so I believe I am qualified to speak about the illness.

    The point that was being made was that sufferers do recover, the success rate (as was acknowledged by another poster) is not high but it is certainly non-zero, I myself returned to work for more than five years and would still be there but for poor management on my part.

    What I regularly see on here and in particular on the forums that cover the illness is a belief that that there is no cure and that nobody can recover, this is simply not the case. I’m not suggesting that it is easy, or that treatment can be applied to the majority of those effected but there are a few who will respond and will rid themselves of this horrible illness.

    1. There IS no cure. There IS no treatment. There IS no diagnostic test. About 25% of people will recover within 18-24 months without doing anything in particular. It is NOT negative to say that ME is incurable; it is realistic. The ME Association is the best organisation I have come across for giving accurate information and the best possible support. Even my GP asks me to pass on old copies of ME Connect.

  9. I do have ME and fibromyalgia so I am ‘one of you’ but I do not feel I should put my life on hold, I’ve had the conditions over 27 years and there have been many times when I have just stayed in bed, hidden under the covers and wanted the world to go away as I was in so much pain and distress, I know where you are all coming from.

    BUT there are alternatives, things. Have learnt over recent years that have made a difference, positive mental attitude, diet and nutrition, exercise, and learning and exploring the conditions,

    I put it to you that an excellent resource is Lissa has written two wonderful books, the first is Mind over Medicine and the second The Fear Cure. Each of these give scientifically proven evidence that the mind and our thought processes are instrumental in our ability to heal ourselves, often without the necessity of medication. Fear of your illness predisposes you to more illness a d disrupts the healing process. Take a look at the description of the books on her site, you might just be pleasantly surprised.

    I am on my positive healing journey and life is full and exciting again, I am not suffering from Poor ME!

    I wish you all well and have a safe and happy week, enjoy the wonderful weather x

  10. Indeed some people do recover from ME, and that is fantastic, but I would suggest that anyone who refers to ME as ‘poor ME’ has not experienced classic Ramsay-defined ME. And whenever anyone on forums talks about their ‘journey’, I tune out.

  11. Fabulous! After 39 years, I’m going to recover. Anyone tell me when, so I can plan the party?

  12. Dear Megrawcliffe,

    Great recommendation reading Dr Lissa Rankin books. However we are all on our own journey and have a story to tell, labelling people with the ‘Poor ME’ is disappointing.

    I’ve visited this after being signposted to This Mornings phone in and Ms Robertsons misinformation. I didn’t expect to read comments such as yours, perhaps they are better places?!.

  13. Stephen and Magrawcliffe, unfortunately discussing any kind of recovery is unwelcome in the M.E. community as you can see. Your either a trouble maker or misdiagnosed. 39% of sufferers return to work? That’s 97 thousand plus people in the uk alone and I’m fortunate to be one of them, however I learnt a number of years ago that discussing any kind of recovery leads to being verbally attacked and shunning, thus why you rarely find any of those 97 thousand people on any public platform discussing their road to recovery. It’s very sad indeed.

  14. I am one of those 30% who returned to work. I’m happy to discuss my ‘road to recovery’ publicly…

    I did not return to work because I had recovered from ME, nor because I was well enough to work (I was still signed off by my GP) but because ATOS decided I was fit and well! My benefits were immediately stopped so I had no money for bills & I was so ill that I did not have the strength to take on the appeals process so I had to return to work to pay my bills. My manager said I was too ill to be at work. I struggled terribly trying to work and I had to be signed off work again.

    Statistically I returned to work..

    1. Yes. It’s frightening how many people think that, if ATOS say you’re well enough to work, it must be true.

  15. I am afraid recovery from M.E is an emotive subject, I am sure many sufferers of M.E were like me very fit and active before becoming ill and literally had their former lives taken away from them. Then having to suffer disbelief from hospital specialists rolling eyes from Gp,s who just prescribe antidepressants ,CFS clinic just doling out G.E.T and C.B.T family and friends saying you just need to buck up and get going,trying every supplement and quack remedy going with no improvement whatsoever. Then to read quote (Their recovery was made possible by a combination of appropriate and necessary medication, pacing, nutrition changes and relaxation/meditation. ) it is enough to send you into a blood boiling relapse.

  16. @Megrawcliffe – Can I just say that positive outlook, nutrition, etc… isn’t going to miraculously mend a broken leg (your body does it in its own time). I was at the happiest point in my life when I was stricken with this illness. I’ve always been an extremely positive person and believe in using imagery and positive thinking. I enlisted the help of a famous nutritionist, too. Twenty years later and I’m still ill. I’ve used alternative therapy. You name it, I’ve probably tried it. If your CNS ends up damaged by a virus, for example, all the best thinking and nutrition is not going to heal it. Same with if you lack a certain protein (genetically disposed). There could be all different reasons why people have symptoms of M.E. I love each day I wake up, I look for the beauty in everything, I’ve never gone down the pity hole, but still I worsen in health.

    Although I believe in positive thinking to help people cope, I think it’s a dangerous thing to assume sufferers are not trying hard enough. People commit suicide over those type of comments, because there’s nothing worse than making you feel as if you continue to be sick simply because you haven’t made enough effort to be well. I have compassion for all who suffer. I cannot judge those around me, for I don’t walk in their shoes. I feel glad for people who have recovered or are in remission. It makes me happy to hear of those cases, truly. I have friends who recovered, but later found out it was adrenal exhaustion they had been experiencing. Some of us may have more going on than meets the eye. My heart goes out to everyone who is trying their best to cope and get some improvement.

    1. What a beautifully expressed response. Thank you – exactly how I feel. The ‘poor me’ comment and the one about people not wanting to hear about recovery made me want to weep with frustration because I try to bring positivity to every day. This requires some effort on the more challenging days (I don’t use the terms ‘good’ or ‘bad’ in relation to M.E.) but I am not alone in facing this every day and I think we all deserve props for that, not criticism.

      1. Eternal Optimist

        @Lise72, I totally hear you and agree with you. I’ve seen a lot of things in my life, but I’ve never seen anyone try so hard to remain positive and get well than my fellow M.E. sufferers. They are champions.

  17. 30% return to work in some capacity. That includes people for whom that is only ever going to be part time, 3 days a week. I wasn’t attacking anyone, just furnishing facts and responding with dismay to hearing a fellow suffered describing ME as being populated by people with a poor me attitude. The condition is what it is but i feel that being overly idealist is as damaging as being over negative. None of us is in any way qualified to pass comment on the experience of anyone else with this condition. This forum should be for encouragement and support. Perhaps those of you who have experienced a good degree of recovery could just stick to describing what worked for you, which may be of use, rather than implying others are not doing enough to help themselves.

  18. After reading some of the above comments,I felt it necessary to post my reply.
    Regarding the This Morning phone in,I am of the opinion that it may have given the wrong impression to say that ‘M.E. doesn’t last for forever’ and does seem to trivialize the illness.Whilst I feel that it is so important not to loose hope when suffering from M.E. you also have to be realistic.
    There are 25% of sufferers that have M.E. severely and sometimes the illness can last decades.For the sufferer this can certainly seem like forever and indeed it can be.
    I was diagnosed as a teenager and was bedridden for 18 months.Since then I have made some improvement but still remain severely affected 23 years later.So for me,the illness has had a massive impact on me and those around me.
    Its quite offensive some of the ‘posts’ that have been written on this site,and of course everyone is entitled to their opinion,buts its hard to believe that such negative comments can come from M.E. sufferers now in recovery.
    Its wrong to say that some sufferers have ‘the poor me’ syndrome and that discussing recovery is completely unwelcome to them.This simply isn’t true and quite a ‘sweep stating remark’ and I wonder how you came to this conclusion.
    Whether an M.E. sufferer has the illness months or years,it can be a devastating illness.Every patient is different and so is there recovery.It can be an unpredictable illness.
    I wish all the 250,000 sufferers out there all the best on their road to recovery,however long this may take.
    So important that the M.E. community support each other and show unity.

  19. Re ¨ME doesn’t last forever”

    If this is the case, then why, if medical professionals are diagnosed with ME, a medical panel will assess them, and if they meet the criteria, award the applicant a pension, as they are unable to practice.

    This was referred to even by the late, great Dr. Melvyn Ramsay, as he himself was on one of these such panels.

  20. Megrawcliffe may I ask are you aware that since about 2010 I think it was people living with ME (PLWME) have been banned not only from giving blood but also from DONATING ORGANS. We would still like to know why you are on the site and what your connection to ME is, if any. Many of us have spent thousands of pounds in a quest to get well but are still severely disabled and live with a host of symptoms including things like gastric paresis (where someone is only kept alive thanks to a drug which releases the base stomach sphincter or the person would vomit and eventually die being unable to process food – pretty tired eh?)

    As other excellent contributors to this discussion have said, many people have been wrongly diagnosed with M.E. and in fact had some kind of chronic fatigue which does not fulfill the true criteria of ME and this has applied to some studies which have been a waste of time and have only damaged the quest for biological answers to this biologically caused disease.

    Your comments remind me how much educating there is still to do in order to get more funding for treatments and a cure as well as the right support to live as disabled people. Happily in my experience fewer people have the “pull yourself together” attitude.

    We experience enough oppression.

    What we need is unity and great campaigning and ways of making the best of our challenging lives whilst pushing for more funding.

    Have a look at this video anyone who has the energy for another click. Only a cold fish could watch it without being moved by its messages based on truth. Please donate and support a little brother running for research funded by ME Research because his sister who has spent most of her life in bed and in pain since 1990 due to a severe form of potentially fatal Myalgic Encephalomyelitis, the same disease which has changed my life too, as an electric wheelchair user since 1997.
    He runs the Edinburgh Marathon on 31st May. Here is his video:-…
    You can donate to ME (biological) Research by texting TWME81 to 70070 £10 or what u want to

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