Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME/CFS Conundrum

Discussion in 'Action Alerts and Advocacy' started by drjohn, Dec 14, 2011.

  1. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    It is often said that the illness M.E. (Myalgic Encephalomyelitis) is "also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS is preferred by doctors, while patients would rather have M.E, because they believe it implies a more serious illness, though this is not borne out by the number of patients who do use CFS.

    The terms are commonly written as the hybrid CFS/ME and, in this order rather than ME/CFS. This produces a conundrum, which is worth trying to unravel, in order to see why there has been so little progress in understanding M.E. If CFS and M.E. are identical, synonymous and interchangeable and CFS is preferred, why not drop M.E. altogether, since nothing would be lost? "M.E." never passes the lips of some influential doctors and researchers, such as Dr Esther Crawley and Professor Simon Wessely; even when asked about M.E., they reply with CFS. One theory is that, if ever an indisputable diagnostic test were discovered for M.E., they would have to admit to having backed the wrong horse.

    As long as M.E. is retained, either independently or as part of CFS/ME, there is a separate identity, or perhaps identities, if either or both are plural terms. If CFS is a plural term and M.E. is one of its syndromes, which are the others? I have never heard of another condition being obliquely attached to CFS/. Again, if CFS is plural and CFS and M.E. are the same, then M.E. must also be plural but, if it is, I have not heard of any subsets - not degrees of severity, subsets - said to be subsumed under M.E. unless one reverses the terms to ME/CFS - but then are we not faced with the same dilemmas as with CFS/ME? So, of the choices of definitions and singularity or plurality, which do researchers and representatives choose? We can find evidence of all of them: CFS/ME ("the chronic fatigue syndrome - ME" - Sussex & Kent ME/CFS Society); CFS, singular, ("This illness ..." Dr Esther Crawley "cost of CFS to UK economy" study and elsewhere); synonymous, ('When we use the words, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), what we mean is Myalgic Encephalomyelitis (ME)., Gail Kansky, National CFIDS Foundation) and any (An earlier version on Phil Parker's website that they called all illnesses such as CFS, PVFS and Fibromyalgia the same name M.E. has now been amended to that they get similar results when given the Lightning Process, whatever they are called).

    In the absence of an agreed diagnostic test, such as a blood test or scan, there are different diagnostic criteria that have been suggested, including Fukuda, Oxford, London, Canadian Consensus, Nightingale and NICE Guidelines. To compound the problems of experimental design further, all of these have been used in different studies, sometimes more than one in the same study, making comparisons impossible.

    With such lack of experimental controls, including bias in the subjects sampled as severely affected people cannot travel to take part, the statistics are bound to be distorted, since there are likely to be many more with CFS than M.E.; conclusions deduced from CFS, cannot be applied to people with M.E., since there may have been few, if any, in the sample studied and recommendations for treatment, which may be beneficial to some with CFS, may be ineffective or even harmful for M.E. sufferers.

    This Research Psychologist, diagnosed with Myalgic Encephalomyelitis in 1988, believes that it is possible to identify a more "pure" group of M.E. sufferers, without the variables "fatigue" - which even its advocates admit is "heterogeneous", "ubiquitous" and "nebulous" - and its bookends "chronic" and "syndrome". Until these contaminating variables are eliminated we shall make no progress with a discrete illness which has a physiological cause and underlying disease process that continues to devastate the lives of millions of people worldwide.

    Yours sincerely
    John
    M.E. Community Trust. org
     
  2. Ember

    Ember Senior Member

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    Lenny Jason's recent study supports the claim that ME (along with ME/CFS) is a subset of CFS: The ME/CFS case definition criteria identified a subset of patients with more functional impairments and physical, mental, and cognitive problems than the subset not meeting these criteria. The ME subset had more functional impairments, and more severe physical and cognitive symptoms than the subset not meeting ME criteria. When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients (http://ehp.sagepub.com/content/early/2011/10/18/0163278711424281.abstract]).

    Again, in his abstract from the IACFS/ME Conference in September (where he presented prior to publication), Jason writes, The current study suggests that these other ME and ME/CFS criteria might be used to identify patients with possibly more homogenous and severe symptomatology and functional impairment. Both ME/CFS and ME criteria appear to select a more severe group of patients than those that only meet the Fukuda et al. Criteria.

    With reference to the ME-ICC, Dr. Carruthers concurs. He has called ME a form of CFS.

    As for other CFS subsets...who knows. Perhaps research will ultimately show that CFS can be secondary to burnout, or to depression, or to fibromyalgia, or to undiagnosed Lyme disease, etc.

    Following recommendations of the ME-ICC though, shouldn't ME be the first subset (or contaminating variable) to be removed from CFS and studied independently? ME may turn out to be just one of the discrete illnesses that has a physiological cause and underlying disease process and that continues, as you say, to devastate the lives of millions of people worldwide under the general name, CFS.
     
  3. Sparrow

    Sparrow Senior Member

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    I know that it's a controversial topic, but I truly think ME and CFS are probably the same thing, just at a different level of severity or with a slightly different reaction from the body. I had what would be very firmly labeled as CFS years ago and lost a few semesters of school to it (no depression, no other odd reasons for the problem - just a viral infection followed by total exhaustion). Now I am bed bound with what would very firmly be labeled as ME (involvement of other systems). I tend to think they're connected rather than that I just have horrible luck. It's been a clear progression for me from one to the other over the years.

    Even still, I don't think that should affect the approach to research. They need to be separated for the purposes of study. You wouldn't advise the same treatments to someone with a bruise to their bone as you would someone with a total break. It makes sense to me that different ends of the same continuum should be approached differently. I just find it very sad that the slant of some of the research done has put us in a position of feeling like we need to defend the severity of our illness at all, or rail against research done on CFS but not ME. It makes me ill to think of people trying to belittle this awful disease. Especially the people who should be in a position to help us.

    But I will admit that it makes me kind of sad to see so much energy and effort being focused on the name. I'm not saying I necessarily agree or disagree with it. It just makes me sad. I wish that energy could be spent in other ways.
     
  4. By definition, the diagnosis of CFS is reserved for complaints without a known cause. ME was finally lifted out of that bin with the publication of the ICC-ME. So, IMHO it is no longer acceptable to consider ME a subset of CFS.

    Other conditions still often disappear into that same bin though, like pesticide poisoning, Hashimoto, Gulf War Syndrome, primary mitochondrial disfunction, forms of depression and anorexia, and so on. That does not seem helpful to me, and I'd rather see CFS abandoned altogether.
     
  5. Ember

    Ember Senior Member

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    Did the ICC identify the cause of ME? What would that be? Or am I misunderstanding you on this point?
     

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