‘ME – The Toxic Tiredness’ programme on BBC Alba – both parts now available to watch

February 8, 2012

Both parts of ‘ME: An Sgìths Nimheil' /'ME: The Toxic Tiredness' are now available to watch by clicking on links in this story. Both parts have been been recorded on You Tube.

To watch the first part, click HERE.

To watch the second part, please click HERE.

If you would like to comment or take part in the continuing discussion below, you will be very welcome to do so.

24 thoughts on “‘ME – The Toxic Tiredness’ programme on BBC Alba – both parts now available to watch”

  1. Mostly very good but as others have said, I don’t like the use of ‘CFS’ or even ME/CFS, CFS/ME, I have had this CFS label forced upon me even though I have neurological ME. Not liking the advertising of Mickel therapy either and I hope they show that it doesn’t work in part 2.

    I did CBT & GET back in 2003 as I didn’t know any better and my condition worsened permanently as a result. 60% bedbound housebound the rest of the time, 13 years of illness and counting.

    Nasim, you were great and got your points across very well. Shame there wasn’t more time so you could really paint a more detailed and broader picture.

    Look forward to part 2, but I’ll be amazed if the Mickel therapy works, if it does then I would seriously try it myself, anything to be well again and get my ruined life back.

    I believe they are a bunch of charlatans cashing in on people’s desperation just like the lightning process and others, anyone they have cured successfully I don’t believe had ME at all. I admit I could be wrong but we’ll see…

  2. Hey M.A.R,

    Thanks, glad you liked the prog. Yes, I have quibbles too, but I am pleased with my contribution, I gave it my best shot. I think I provided the voice of being ‘angry at psychiatrists/non-believers’, which is hugely important, but I did not really get a chance to talk much about the catastrophe that ME had personally been for me, it was kind of glossed over, but that is the nature of these progs, you only get slivers of people’s lives. And also it was so long ago the illness punched into my life, I am kind of over the shock of it – and I have also been ‘lucky’ to have been able to shape some kind of life though very *much* reduced to what it would have – should have -been.

    And 29 years is a heck of a long time to squash into a few mins here and there. Wish I could have said more about treatments I’d tried, how bad it got for me at my worst times. And when I first got ill in France, overwhelming nausea was one of my symptoms, went on for years, how could I have missed that out?! Wish also I could have said more abt the symptoms I still experience, not just the post-exertional toxicity, the almost constant pain (varying in severity) I have in my calves, especially when I wake, the inflammation I feel in my head for no reason whatsoever, the not being able to stand for long, etc etc etc. Even leading such a slow-paced life I still often feel very unwell, I can’t sustain anything.

    But I hope all that is captured more in my book and I am delighted with the wee segment on the book, though I am bemused the hell of writing it was not given any space, seems like I just decided to write a book and hey presto! it was written and published! But I think I said that on my blog already, I really am a bit dizzy now with post-mortems on the programme, I need to switch off and rest.

  3. M.A.R

    ME, CFS, PVFS, CFIDS or whatever other name you wish to call it, is an unknown disease. These are labels to describe a set of symptoms that cannot be associated with other, known, illnesses.

    So to say you might have ME, but not CFS, or those who were cured by a particular treatment couldn’t have had real ME, is patently ridiculous.

    To say another’s collection of symptoms weren’t as real as your collection of symptoms is as insulting as the doctors in the medical profession who refuse to believe any such condition exists at all.

    If someone has a collection of symptoms that are debilitating, whatever the label, and a treatment alleviates those symptoms, then this a cause for relief, not insults.

    The question worth asking is whether a treatment that helped someone with a similar set of symptoms to your own might help you or not. Maybe it will and maybe it won’t.

    You could just as easily (and equally wrongly) say perhaps they have “real” ME and you don’t – if the medical profession doesn’t know what ME is, then how can you have the right to say you do, and judge others accordingly? It’s a ridiculous statement for one to claim ownership of a label that basically doesn’t mean anything and use it to downplay someone else’s debilitating symptoms.

    So you hope their treatment fails? Shame on you. How do you expect we will ever move forward if the prejudice within the ME community is as deeply rooted as those outwith?

  4. So you think that a ‘talking therapy’ can cure a proven physical disease that has over 5000 peer reviewed and published papers, all of which were written from sound biomedical research? Ask Dr Byron Hyde, Professor Malcolm Hooper, Dr Nigel Speight, Dr Ramsay, Dr Elizabeth Dowsett, Dr Shepherd etc etc.

    I would agree that no matter what they have wrong if they get relief from a therapy then great!

    I do not agree with muddling a distinct neurological disease with a psychologists unexplained psychosocial syndrome umbrella diagnosis for any illness based upon ‘unexplained fatigue lasting 6 months or more’ as being the predominant symptom. ME does not require fatigue as a symptom at all and a diagnosis of CFS does not require the distinct post exertional malaise or neurological symptoms as experienced with all ME patients. Hence the PACE trial excluding patients with neurological symptoms.

    As for my comment that I hope it is proven not to work, that was not meant in such a way as to suggest that I don’t want people to improve or get relief or even a cure. If you read my comment again you will see I clearly stated I would even try it myself if it was proven and that the outcome remains to be seen. Again ask ME researchers and experts about talking therapies, the lightning process etc and see what they think of this approach to ME.

    With regard to the label and the ‘rose by any other name, is still a rose’ nonsense, we are all told that CBT & GET are the gold standard treatment and cure for ME yet when pressed on the matter Michael Sharpe admitted that the PACE trial was not studying ME but CFS. CFS being a psychosocial syndrome as per the Wessleyan mantra, ME not being the same entity. A rose is a rose and should not be renamed or mixed up as being the same as multiple other plants.

    Dr Byron Hyde clearly distinguishes CFS and ME as NOT being the same illness.

    Read the information on hfme.org for starters and some information from another organisation-

    Then what’s the difference between M.E. and CFS? M.E. experts from the U.K., U.S., Canada, Australia and many other countries who have studied this disease have stated that it’s the definitions that determine the diagnosis.  The current Consensus Document and most M.E. definitions (Ramsay, Dowsett and historic) require the major criteria of severe muscle fatigue following minimal exertion with prolonged recovery time, and neurological disturbances, especially autonomic, cognitive and sensory functions, and variable involvement of cardiac and other systems, with a prolonged relapsing course. 

    This is a very specific list of criteria, and a major point to note is that the CNS (central nervous system) dysfunction of M.E. can be measured.  (See below.) Alternately, CFS definitions present the major criterion of fatigue that lasts 6 months and reduces the level of function by at least 50%.  Post-exertional malaise and neurological abnormalities are considered minor and optional criteria.  So this broad definition could encompass any of many illnesses in which fatigue plays a role.  Fatigue is not only a symptom of numerous illnesses, but it is something experienced by normal, healthy people.  And there are no reliable objective ways to measure fatigue.

    “The primary diagnostic criterion for M.E. is acquired CNS change.  We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET and neuropsychological testing. CFS patients may not have any of these findings….”Dr. Byron Hyde, author of the Nightingale Definition of M.E. states that, “I do not describe a patient as having M.E. unless there is an abnormal SPECT.  If the SPECT is normal, I often repeat it along with xenon SPECT.  If the brain scans remain normal, I conclude that it is unlikely to be M.E.  I then refer to the patient as a CFS patient and search for other causes of the fatigue syndrome.”  (See examples of SPECT, xenon SPECT and other neuroimages of ME and CFS patients on the Neurology Research page.)

    Dr. Hyde has described patients that have come to him with a “CFS” or psychiatric diagnosis that he has investigated more thoroughly.  Some he has diagnosed with M.E. after thorough interview, including determining acute or gradual onset, neurological, cardiac and other screening.  But in many others he has found underlying, treatable causes for their debilitating fatigue. 

    Some examples he gives are:1) One man came to him diagnosed as a psychiatric patient which Dr. Hyde initially agreed with, due to the man’s obvious irrational behavior during Dr. Hyde’s interview with him.  The man said he slept a lot, was still tired after sleeping and felt he had “chronic fatigue syndrome,” since he met the CDC CFS case definition criteria.  Dr. Hyde simply listened to the man and observed his behavior over the course of two hours.  He gave the man a  requisition for a few tests which within days revealed he was severely diabetic with extreme hyperlipidemia (high cholesterol/triglycierides, etc.). Within weeks of beginning treatment, the man was behaving rationally, and it was further determined he had had a recent myocardial infarction (heart attack).

    2) A woman from the U.S. who had been diagnosed with “CFS” by several ME/CFS physicians came to Dr. Hyde with significant brain dysfunction and overwhelming fatigue.  He had Doppler tests done on her the same day that found “80% obstruction of both internal carotids, and complete obstruction of the basilar artery feeding the brain.”  Internists, neurologists and ME/CFS specialists in the U.S. had all missed the obvious.  “The obstruction in one of the arteries was removed and she improved.”

    Drs. Hyde, Dowsett and others state that doctors should also take a complete patient history to determine other significant factors that distinguish M.E. from CFS and other fatiguing illnesses.

    That is but a tiny snippet of the available information that proves beyond any doubt that CFS and ME should be separated once and for all and that CFS can only ever really be a misdiagnosis whether it is used as “the preffered term for ME” or as a label for other misdiagnosed illness.

    Why are these tests such as SPECT, XENON SPECT, PET not being routinely used as dignostic tools and offered to every patient presenting with ME symptoms so they can be properly diagnosed and treated as opposed to labelling all as CFS and offering only CBT/GET which are dangerous and detrimental to most ME patients?

    As for moving forward, the world should adopt the name ME to mean ME and start investing in real scientifically sound biomedical research instead of allowing psychologists, insurance companies, benefits agencies and politics to muddy the waters by renaming a disease and dictating where and how money is spent, filtering it all to psychological or other illnesses.

  5. Hmm, interesting to read about your friend Nasim. So like I said, maybe mickel will prove me wrong on the programme tonight??

    Can I ask though, if I’m not being too forward or nosey, why have you not tried or even considering Mickel therapy given your friends success?

  6. Hey M.A.R,

    That is a good question. RE. Mickel I don’t *believe* it would help me, and believing this kind of treatment would help seems to be key to it working. But I cannot deny – and would not – deny it helped my friend – though like I said she was highly sceptical to begin with. But her reality is that she is much better – and from our p.o.v – PWME since eighties, having both tried everything under the sun – it is sth of a miracle for her.

    Also, my friend is not claiming it will help everyone, all she is saying is it helped her. She is not an evangelist – far from it – but if it helped her she clearly wants to share the suggestion it could help others.

    Still, I may think there were also other factors, like her pregnancies (women with ME do often improve, but you also have to get to the place to feel you can consider pregnancy – I never did), and also she was on a slightly upward curve already, improving a bit then relapsing, as often happens (but she really was as severely and hellishly ill as you could imagine, at times). I think she would agree that MT did not get her *suddenly* from 24hrs a day bedridden to being to where she is now, though it was still a major leap into wellness for her.

    Also, her therapist (a ‘recovered’ ME sufferer) has since relapsed badly – that is referred to on her blogpost I linked to, on the thread – but you can read more there, it feels a bit odd to discuss my friend’s experience like this on a forum she may not see, though I did say to her I may link to her in the context of Alba.

    From my own pov, having been ill for so long I guess I just don’t trust the knowledge of the MT therapists, I mean how do they know more about my illness than me? They are not neurologists or immunologists! Where is the science? The only things that have helped me – apart from time (years!) and pacing – have been anti-inflammatory: ACTH injections and, later, intravenous vitamin C – maybe on some weird level sth like MT can also be anti-inflammatory, physiologically, but I am just not convinced. But of course, people get better on drug placebos, if they believe they are on the real thing.

    I also did the Gupta therapy, which is similar in principle, I think – and it did not help me.

    Sorry this is such a long reply.

  7. Thanks Nasim, I was just curious.

    I read your friends blog and the questions and comments on there from others. I also wondered about the nature of the therapy and would have asked, as others did, exactly what the treatment entailed and why she believed it had worked for her but as she said she doesn’t actually know. The other thought I had was that maybe she was already making a recovery naturally that just happened to coincide with the period of therapy. Reading what you have said, it is possible that is the case, though not definite. She clearly did have properly diagnosed ME and it’s great that she has made a recovery, whatever the reason! I hope she continues this way and does not relapse later on.

    What is most worrying is that her therapist has relapsed thus showing the therapy is not necessarily a permanent cure. Has she relapsed to a worse state than before and if so is that anything to do with the therapy and a period of overexertion because she thought she was cured? So many questions that can’t really be answered.

    I suppose the therapists won’t tell anyone their methods to protect their finances but what I find most odd is that MT started as therapy for ME/CFS and it is now being advertised “At Mickel Therapy, we can offer effective treatment for Chronic Fatigue Syndrome, Depression / Anxiety, E-Motions, Fibromyalgia, Irritable Bowel Syndrome, M.E (Myalgic Encephalomyelitis) and a range of other conditions.” Other conditions also include, Multiple Sclerosis, Insomnia, Migraines, and certain types of back pain and skin conditions.

    “When the doctor told MR that she had M.E she didn’t believe him, and for the next year lived in denial. After 15 years of trying everything, she turned to Mickel Therapy. She says, “It took me eight sessions, but at last I am cured.” The “just eight sessions ” seems too good to be true, and such things usually are.

    I find this hard to swallow myself, it just seems too ‘magical cure’ for as much as they can add to the list for me. Also notice that they clearly separate CFS and ME in their list yet they mix the two on other parts of the website, what’s that all about? Oh and what on earth is E-Motions?

    I just can’t help but be distrusting and sceptical about it.

  8. I first discovered “Mickel reverse therapy” by googling ME and CFS shortly after I became ill and before I learned anything about ME or CFS or the dreadful problem of the disease being cornered by psychiatrists and deemed treatable by a bit of exercise and positive thinking.

    I have an Hons BSc. and a background in research and teaching in biochemical pharnacology.
    I could tell just from reading the blurb on the website that it was a load of money-making pseudo-scientific nonsense, designed to take advantage of sick folk.
    The website makes it clear that the Mickel therapy *theory* is trade-marked, that it is not based on any real scientific information and “e-motions” are a Mickel Invention.

    I have been far more than “skeptical” about it from the start.
    It’s charlatancy.

    You’d be as well having “psychic surgery”.

    I wonder why that hasn’t been suggested for PWME yet?

  9. Sounds very like the Lightning Process – that’s trademarked as well. Load of guff about standing on spots on the floor going ” I choose the life I love”. Oh for God’s sake. (Er… in LP, what do the people who can’t stand up do….). Big money spinners on the backs of the chronically ill.

  10. I would imagine, from the blurb that they are referring to hormones when they talk about their trade-marked e-motions, given that it’s hormones which effect moods.

    Take, for example, steroid rage or PMT, and consider that SSRIs don’t fix depression until they’ve completely reorganised the hormone systems.

    It’s well known that the hormone comes first, then we “label” the feeling that is created with the most suitable explanation likely.
    It’s how brains and their bodies work.

    Sometimes adrenalin can create excitement, sometimes fear, sometimes anger, sometimes anxiety – it depends on our immediate circumstances.

    Pain has a strong emotional component – remember that the balance between pain and pleasure can be a very fine one indeed.

    So what is going on in Mickel therapy ™ is they’ll be trying to get you to think about your feelings differently, give them a less unpleasant “label”.

    It’s CBT, it’s LP, it’s psychic surgery, it’s delusions, it’s just more talking twaddle.
    Which appears to be developing into a cult.

  11. Just a quick comment on the whole ME vs CFS debate. It may be that there are doctors who believe there is a difference between the two, but considering the majority of doctors in the UK believe the two to be the same and diagnose accordingly, is this debate even relevant anymore? The majority of people being diagnosed now will be diagosed with CFS, as I was (although I’ve chosen to use ME for a variety of reasons) regardless of whether there are two separate strands of this illness which has certainly not been proved. As someone else pointed out, there are probably multiple strands of fatigue illnesses and since there is no proven difference between a person diagnosed with ME and a person diagnosed with CFS, is this really something we should be concerning ourselves with? I agree that CFS is an inadequate label with negative connotations and would welcome a move back to ME, but trying to separate the two only seems to, in my experience, alienate those who are diagnosed with and who regard themselves as suffering with CFS and implies that their illness is somehow not as serious as others.
    I just feel there are far more important things to be spending energy on!

  12. There are very good reasons why ME should be separated from CFS as they are not the same illness at all. The only reason Doctors have come to say they are is because they don’t know any better and are taught to follow the mantra of Simon Wessley, the NHS and the NICE guidelines etc. It is most definitely something that needs to change and I believe that all ME sufferers need to stop using CFS and only ever use or accept ME to mean ME. A rose by any other name is still a rose?? NO a rose is a rose is a rose!!! You treat a rose as a daisy and it will likely die or not be very healthy!!!

    Most ME patients do not wish to be treated as biopsychosocial cases given CBT and GET and lumped in with all other fatigue causing illnesses under one umbrella symptom of chronic fatigue, especially when many ME patients do not have fatigue and it is not a symptom that must be present in order to be diagnosed with ME, yet it is the primary symptom to be ‘diagnosed’ with CFS. I am not saying that people with CFS do not suffer terribly or that their illness is not ‘real’ but anyone labelled CFS are only so because the Doctors are either unable or unwilling to properly diagnose the underlying cause for the chronic fatigue.

    CFS is not a diagnosis, it is a description of a symptom associated with many illnesses and can never be considered a ‘diagnosis’. It is not an illness and it is not a disease process. Anyone diagnosed with CFS has something else wrong with them that is causing them to have fatigue that has gone undiagnosed. Why on earth they have now lumped gulf war syndrome, ME and multiple other illnesses together under the CFS umbrella makes no sense whatsoever.

    The following link explains in detail why CFS is not ME:


    Getting back to the subject of the TV programme, I remain unimpressed by the mickel therapy as the first thing to note is that Dr Mickel clearly stated that he considers all ME/CFS/FM etc to be the same fatigueing illnesses. He has no scientific evidence to show that it works on any illness and his figures keep changing when he talks about his success rates. I can guarantee that the majority of people he claims had ME that he has ‘cured’ did not have neurological ME but had other chronic fatigueing illnesses under the guise of CFS.

    What also struck me is that reading Nasim’s blog lead me to information claiming that the lady in the programme who had been cured by Mickel and had herself became a Mickel therapist actually had reverse therapy, not MIckel therapy as they had not even ‘invented’ Mickel therapy at that time plus her illness had gone through phases of recovery over the years and she was in an upward turn at that time. She then went on to have a child and in many cases women with ME have appeared to recover during or after pregnancy. So there are questions to be asked there as to whether the reverse or Mickel therapies actually played any part at all?

    As for Kim, I want to say firstly that I am not belittling his illness or suffering in any way but I don’t believe he should have been in a programme about ME. He states himself that he has CFS and does not use the term ME but then in another sentence on his blog he says he uses ME and CFS interchangeably because “that’s what the doctors told me was wrong with me”. He also freely admits suffering with depression throughout his adult life. This is unacceptable to me because CFS is not a diagnosis and he obviously has an underlying cause for his CFS that is going undiagnosed and untreated. The doctors have simply labelled his symptoms and not his illness because they do not know what is wrong with him or the cause of his illness. Kim freely talks about tiredness and fatigue and associated symptoms of brain fog and no emotional reserves but he does not mention any of the other 60+ symptoms of ME.

    I am very happy that Mickel therapy has helped Kim and others and again I am not saying their illnesses are not ‘real’ or ‘just CFS’ etc all I am saying is that I don’t accept CFS is the same as ME and I don’t accept that MT, Lightning therapy, reverse therapy, gupta etc are in any way a treatment or cure for ME. These therapies are no better than emotional managment programmes and may help with coping just like CBT can to a degree but they can in no way cure a neurological disease.

    Some parts of the programme were great but there was a lot there that just did not cut it for me. There needs to be a nationally shown Panorama or Horizon programme about this whole CFS, ME mess from start to finish showing the full history of ME including the epidemics and outbreaks such as the Royal Free Hospital and the invention of the CFS label, then followed up with a national showing of Voices From The Shadows. Dr Byron Hyde, Dr Nigel Speight, Professor Malcolm Hooper, Dr Charles Shepherd, Dr Betty Dowsett, Professor Behan etc should all be involved in any programme.

    My comments and opinions are not intended to upset anyone, cause arguments or flaming wars, belittle people or their illnesses. They are simply my opinions and everyone is entitled to their own.

  13. Just to add, I do think Alba still had some good stuff and very much reflected the conflation of ME and CFS. The film-makers, after all, weren’t giving muscle biopsies pre-interview, they were, in good faith, filming people with ME, or a diagnosis of ME. I think Kim got a diagnosis of ‘CFS/ME’. In my opinion, the sooner this confusion of diagnoses stops the better. What good can come of blurring neuroimmune and biopsychosocial? And I reiterate that this does not mean peope with CFS do not go through their own hell but it is not the same as the hell of ME.

  14. Good to know we’re on the same page Nasim.

    I’m going to grab a copy of your book as I haven’t bought a copy yet, shame on me LOL.

    I recently read ‘One Last Goodbye’ which was pretty heartwrenching and emotional but I am expecting ‘The State Of ME’ to be not so heavy and no doubt showing your clear sense of humour and wit which I have picked up on in some of your musing on your blog. I’ll let you know how I get on with it!

  15. Hey M.A.R, Hope you enjoy The State of Me, yes, there is black humour in the novel, but I think it gets across the hell of ME (the character goes from severe to moderate) and what it does to a life. Also, it’s in the context of a student who gets ill in early 80s and it follows her for 15 years. In some ways, the politics were much simpler then, there were people who believed we were physically ill and people who didn’t (‘yuppie flu’ was the label we fought against).

    There are clearly so many more complexities and tangents to the narrative now. And her story is mostly pre-internet. If she needs info she goes to the library or bookshops (if she can).

    I also think worth repeating that the conflation of ME and CFS is the fault of the diagnosers, not the diagnosed.

  16. For all you high and mighty “we have real ME and you don’t” bullies.

    Clearly the irony has never entered your heads that you treat those with mere, lowly, not-as-bad-as-us CFS sufferers with exactly the same arrogance and superiority as the people you are upset with for treating you that way.

    So some poor soul, suffering from God knows what (because certainly the doctor’s don’t), has been given a label. The label is useless because they can’t tell him or her what’sactually wrong or what can be done about it.

    The ONLY solace, the ONLY comfort they have, is they can at least chat with other people who have the same label.

    Oh, but no, some can’t do that can they?

    Sorry, they’re not allowed in your gang because they don’t have “neurological ME”, they must have “biopsychosocial CFS”


    I don’t remember any doctor taking a swab or blood test or getting me to identify patterns of dots on a sheet of paper then saying which kind I had got. What tests were you given to determine whether you have “neurological ME”, or “biopsychosocial CFS”? How come you know what these people have even though you have never met them?

    Youu don’t know what they have. You don’t even know what you have.

    The whole point of the ME Association is to help people struck down by this invisible and unknown illness. It was created because there were too many people out there telling us it was all in our heads.

    We should be helping all people who have this unknown condition, not telling some of them they should f*** off and get their own Association, because it’s all in their own heads.

    You are bullies. Where is your compassion? You have turned into the uncaring, unsympathetic people you accuse others of being.

    I know what you are going to say – that it’s important we know the distinction between “neurological ME” and “biopsychosocial CFS” so people get the appropriate treatment.

    And you will have missed the point again.

    1. B1, Are you including me in your indignation? I reiterate my comment above: ‘that this does not mean people with CFS do not go through their own hell but it is not the same as the hell of ME’.

      I don’t bully anyone, I abhor any kind of bully.

      And M.A.R has been extremely sensitive in his/her outlining if the problems.

      Your aggrieved tone is, I’m afraid, only symptomatic of the conflation that the psychiatric lobby have caused.

      And since you ask: the battery of tests my (now retired) consultant neurologist did to confirm suspected ME included:

      *specific antibody titres of Coxsackie including IgM;

      *lymphocyte subset analysis;

      *detailed single fibre EMG and measurement of jitter;

      *specific muscle biopsy

      Subsequently, he told me I had a ‘houseful of abnormalities’.

      You are right, at the end of the day, we cannot be sure who has ME and who has ‘CFS’, but the continuing conflation is simply harmful and misleading and does not help anyone. Until consistent criteria are used to *properly* diagnose neuroimmune illness, the chaos and obfuscation and hurt will continue.

      Treatments like graded exercise which *seem* to help so-called ‘CFS/ME’ are downright dangerous for ME, can you not see therefore that it is dangerous to combine the illnesses?

      Yes, everyone deserves support and yet you don’t seem to be aware of the appalling way that PWME have been treated since the Wessely rhetoric took hold, being labelled as mentally ill/having false illness beliefs when we are not/do not. Why on earth should we embrace a biopsychosocial label, why???

      I can think of nothing more frightening than having ME, the illness I have, and yet being misdiagnosed as CFS (which happens frequently). If I suspected I had neuro ME I would seek clarification from my GP and ask what criteria s/he was using. I would point out the NICE flaws (all of which takes energy I know).

      It is not a bed of roses for PWME, or unexplained chronic fatigue disorders but that does not mean we join together and sing songs and pretend we have the same illness. It is nonsensical to do so.

  17. Without wishing to add fuel to fire I think this is a good link:


    It explains why, someone like myself, diagnosed by neurologist, pre-Wessely involvement, is so passionate about labels. I was diagnosed in 1984 (ill since 1982), according to Ramsay criteria, though I did not know at time – I was just very grateful to understand why I felt like I was dying (and that is not to be dramatic). And the neurologist (Prof Behan) wrote the preface to Dr Ramsay’s Saga of Royal Free Disease, (published 1986).

    This is also useful, Jason et al review of ME case definitions (2011).


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