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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
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
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.