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Letter, Re: New website Dorset ME Support Group (Daily Echo, 15 February 2012)

Discussion in 'Action Alerts and Advocacy' started by drjohn, Feb 16, 2012.

  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.

    Daily Echo Letters.
    Cc: Dorset ME Support Group

    Groups such as the Dorset ME Support Group are going to have to decide which patients they represent because, contrary to what they say, M.E. (Myalgic Encephalomyelitis) is not the same as Chronic Fatigue Syndrome (CFS), or any of its variants, Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), or conjoined hybrids CFS/ME, all of which terms they have on their website (http://www.dorsetmesupport.org.uk/?page_id=8) and continuing to treat them as synonymous or interchangeable is impeding progress not only for M.E. sufferers but all patients claimed within this indiscriminate bundle.

    The M.E. Community Trust.org offers its objections and proposes a completely polarised, mutually exclusive, view, with suggestions for how to proceed, which I hope, in fairness, your newspaper will give equal space and prominence as you did the promotion of this new website (New ME website launches to help support sufferers in Dorset, Bournemouth Daily Echo, 15 February 2012 -- http://www.bournemouthecho.co.uk/news/features/yourhealth/9531839.New_ME_web/).

    I invite the Dorset Group (or anyone else) to explain why I am under a misapprehension in believing that M.E. and CFS are different. On the contrary, it is logically untenable to say that they are the same. CFS, by definition, cannot be used in the singular, since there are at least seven different sets of criteria offered for this collective term. Furthermore, patients once diagnosed CFS are now known to have another illnesses: hypothyroidism, Coeliac, Diabetes, Lyme, Lupus, Crohn's, Behet's, Myasthenia Gravis, MS and, of course, many more as yet unknown. Yet, researchers of some reputation and who influence policy regularly speak of, "This illness ..." as though it were one. Nor is a fudged conjoined hybrid acceptable, either way, CFS/ME or ME/CFS. I have a test of their fidelity to this claim: If those who persist in saying that CFS and M.E. are identical and that CFS is the preferred term (CFS was invented after M.E. to improve upon it), they should have no objection to dropping the term M.E. and this is what we shall be inviting everyone who expresses this view to do.

    Maintaining this artificial hypothetical construct since 1988, reinforced by establishment of CFS clinics in 2004 and the NICE guidelines 2007, which direct GPs to refer patients of all CFS/ME variation, leads to scientific contamination of the subject samples tested. It is likely that there are very few people with M.E. included because they would be too ill to travel to take part. Yet the conclusions are applied to them. Thus, even if treatments such as Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) can be shown to be of any help to other patients, hard-knock experience and research evidence to date (Twisk & Maes,2009) shows that CBT is disappointingly ineffective, patients usually relapse and GET makes a majority of M.E. sufferers worse, some irrecoverably so. Thus, it is morally reprehensible to continue this way, knowing that M.E. sufferers are being neglected, not being offered anything at all, or else forced into the only treatments, which may harm them.

    The M.E. Community Trust.org, by contrast, asserts that Myalgic Encephalomyelitis is a discrete illness of physiological origin, with an underlying, recurrent, disease process which, in the absence of a preferred universally diagnostic test, can be identified without the nebulous "fatigue", or any kind of psychiatric illness being a prerequisite and with some cardinal symptoms, such as Post Exertion Relapse and POTS (Postural orthostatic Tachycardia Syndrome) and/or Orthostatic Intolerance being a sine qua non; that is a "must have" for M.E but not present in other indiscriminate CFS conditions. When this more pure group of M.E. sufferers has been defined, it would be possible to look for common factors, beyond any obvious outstanding similarities, for example by scanning for areas of inflammation, which may lead to effective treatments and, hopefully, recovery.

    Grossly unfairly, this alternative is not only rudely ignored, or ridiculed by those who continue to pursue the CFS fits all approach but receives none of the funding.

    Since there is no sign of change to this unsuccessful methodology and M.E. sufferers remain ill for decades, with hopes only occasionally falsely being raised then dashed, the M.E. Community Trust,org announces that, if such groups will not voluntarily dissociate M.E. from their claims, we shall divorce ourselves from them, on the grounds that one cannot insist on keeping an abused partner in an unhappy relationship, forged by a shotgun wedding, a quarter of a century ago.

    Our approach is not a provocatively, punch-on-the-nose aggressive one but it is, necessarily, adversarial. There isn't a fence to sit on. Unless you embrace Myalgic Encephalomyelitis you, by default, allow CFS and permit the amount of contamination it brings to any experimental design which tolerates it. We cannot find any room for co-operation. We do not expect to be rudely ignored and we do expect anyone who makes such claims, which we believe are impeding our progress, to justify or withdraw them and not repeat the same offence.

    As with a hypothesis in any other scientific field, we expect to be required to prove it, with confidence levels generally accepted by peers and, better still, with measurable, sustained, recovery in patients from an exclusively pure M.E. group. We plan to conduct this research in line with the principles of validity and reliability expected in any experimental design and with no-strings funding from sources, who do not have a career interest, or profit motive, in the direction of outcome of the work and we place only people affected by M.E. as our number one priority. We shall go at the pace dictated by our limited energy and meagre resources, which could be accelerated by people of like mind, around the world, to whom I appeal to join us.

    I also appeal to people who are affected by M.E. to support, in writing, with as much energy as they can manage and by subscription, the ethos of the M.E. Community Trust.org. Those who are able but do not do so, or leave it to others, distort the statistics by dilution of numbers and bias of those who may do, thus perpetuating this illness which has devastated so many lives.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org
    maryb and Ember like this.
  2. Ember

    Ember Senior Member

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    Thank you for your letter. One aspect of your argument confuses me. You note that patients diagnosed with CFS are likely to have other illnesses. Shouldn't the list of such illnesses include ME? If ME were included in the list, wouldn't that undermine a completely polarised, mutually exclusive, view?

    I'd be interested in your response to Gordon Broderick's proposal:

    Firestormm likes this.
  3. drjohn

    drjohn Senior Member

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    Good point to make, Ember. Will you also copy (or adapt it) to the newspaper. I always say the more who do the better the chance of some being published and maybe a follow up. This time more people seem determined to write than ever but we need to see them in print. The letters page is letters@dorsetecho.co.uk
    The Editor is toby.granville@dorsetecho.co.uk As many as can manage please. Unlike some others, I encourage all views not just my own. Cheers John
  4. Sparrow

    Sparrow Senior Member

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    Assume for a moment that some people labeled with "CFS" do indeed really have some other medical issue that has been incorrectly diagnosed. But that some really do have ME, just at a milder level. The similarities between actual CFS and ME seem pretty staggering to me (symptoms, onset, etc.). Cutting out people who have a less varried symptom set to start with, but are otherwise consistent with an ME diagnosis doesn't seem any better to me than the rest of the biases against us out there. And people who have CFS (meaning debilitating fatigue, sleep, pain, and viral issues, but not necessarily stomach troubles or heart problems or obvious neuroendocrine symptoms), aren't exactly living the high life either. I think there probably are two distinct groups that present with severe fatigue. I would call them "ME/CFS" and "Not ME/CFS". Or alternatively, the diagnosis criteria for "just CFS" needs to be changed. Because currently it isn't just "broad generalized fatigue." And the people with the sore swollen glands, and memory/concentration problems, and severe pain, and headaches, and unrefreshing sleep, and whose whole pile of symptoms worsen extremely after exercise or mental activity (which is the "CFS" symptom set)? In my opinion, those people pretty clearly have ME, just with a different label on it.

    I had classic "CFS" symptoms. Now my illness has progressed to classic "ME" symptoms. I think the likelihood that I developed a whole different illness that progressed out of the first one but overlaps in tons of symptoms is remote at best. It seems clear to me that I had the same illness all along. I do not believe that it is as clear of a division as many people in the community would like it to be. And it feels a bit like brushing off the "CFS" people and dismissing the severity of their illness the same way some doctors brush off people with "ME". And we all know how wrong that seems.

    It is easy to want the CFS people to be a distinct group, because that would make things easier for us, and separate us clearly from some of the faulty or misleading research that's been done. I feel like often in our desire to see ME taken seriously, we end up brushing off those "CFS" people as being only mildly inconvenienced by their illness, or able to get better through exercise and therapy. I do not believe that is the case. And it frustrates me to see a lot of effort going into "it's CFS people who get better that way" rather than "that's an unfounded load of crap, based on faulty selection of test subjects, and is unfounded according to further research results anyway."

    I just feel like our efforts would be better spent focused slightly differently. Is including people who do not clearly and certainly have this illness in research foolish? Of course it is. That is a problem. Belittling the physiological nature of what's wrong with us? That's a problem too. A huge and ill-informed one. And I'm all for streamlining research by looking at subgroups and different levels of functioning in particular. Some studies done on bed bound patients only seems wise. But calling some of us CFS and some of us ME does not seem like the answer to me.

    The researchers and medical professionals who would bother ignoring evidence on the severity of our condition aren't the ones that are going to pay attention to or care about a name change anyway. At best they would just start publicizing that "ME" gets better with GET and CBT. And where does that get us? I feel like if we have energy to give, it would be better used writing letters asking for more physiological research funding, or better education for doctors about the realities of our illness, rather than focusing too much on which label gets applied to it.

    Which I realize is entirely just my opinion. ...But I'm not one to always be able to keep it to myself. :) Sorry for the blargh. At any rate, thank you for your activism, and dedication to trying to improve the lives of people affected by this illness. ...Whatever we choose to call it. ;)
  5. drjohn

    drjohn Senior Member

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    Hi Sparrow, it is the "whatever we choose to call it" that needs addressing as you will see in my 2nd letter. There needs to be consistency. If we can't agree, I suggest that everyone makes it clear, at least, what they mean. Cheers John.
  6. drjohn

    drjohn Senior Member

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    2nd Letter, suggested labelling standards

    2nd Letter: Re: New ME website launches to help support sufferers in Dorset (Bournemouth Daily Echo, 15 February 2012)

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

    Daily Echo Letters.

    The claim that M.E, (Myalgic Encephalomyelitis) is the same as Chronic Fatigue Syndrome (CFS) and any of its variants (Re: New ME website launches to help support sufferers in Dorset, Bournemouth Daily Echo, 15 February 2012) is as unacceptable and leads to the same erroneous conclusions, as saying that any person, place or thing is the same as the name of its collective group and/or any of its other group members. For example, that apple could stand for ALL fruit, when we know there are many other types of fruit, or that apples (which may have variants of its own kind - Granny Smith, Cox, Gala etc.) are just the same as oranges, bananas etc.

    The crucial problem is that studies are not comparing like with like and, conclusions that may be recommended for the eating, packing, storing or processing of some fruit, may be inadvisable or even harmful for, say, mangoes, which were included not in the study.

    Although the membership of some items may be contested (for example, tomatoes, most often a fruit, are sometimes claimed to be a vegetable if cooked) it is most often possible to be sure which categories they may not be in, for example insects, or road vehicles.

    Some refinement may be by provenance, for example, Champagne is a sparkling, alcoholic, wine from only that part of France. If the essential criteria are progressively loosened to, say, Bubbly/Champagne, one can permit other sparkling wines; then, if the requirement of alcohol is dropped, lemonade and fizzy water may be test subjects, with which no comparison with Champagne is possible.

    To avoid such contamination of subject selection in other areas, there are advertising standards and rules of product labelling to ensure consumers know what they are about to purchase. I suggest such a voluntary code for all groups and individuals who use the term M.E, to include a definition of what they mean by it (for example, Ramsay-defined M.E.; or World Health Organisation Handbook ICD-10; G.93.3) and the more specific the better.

    If people were not aware that the naming of M.E., quite separate from CFS, was such a crucial matter, you could put indiscriminate labelling down to ignorance; now they know, it would have to be carelessness, or wilfulness.

    Yours sincerely
    drjohngreensmith@mecommunitytrust.org
    Dr John H Greensmith
    ME Community Trust.org

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