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

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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,

Behçet'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@...

Dr H Greensmith

ME Community Trust.org