Letter, Re: I never imagined my sister would die (Irish Times, 24 January 2012)

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Irish Times Letters.

Until we identify M.E. (Myalgic Encephalomyelitis) as a seriously

disabling neurological illness, with a physiological cause and

underlying disease process, quite separate from " fatigue " and its

bedfellows, " chronic " and " syndrome " , people will remain neglected, ill

for decades and there will be some martyrs, including Sophia Mirza (I

never imagined my sister would die, Irish Times, 24 January 2012 --

http://www.irishtimes.com/newspaper/health/2012/0124/1224310666209.html), Lynn

Gilderdale and many others around the world, whose cases are not

investigated, either in life or post mortem and from which tragedies we

- quite disgracefully and unforgivably - are not learning.

Chronic Fatigue Syndrome is a collective term that cannot be used in the

singular, since there are at least seven different sets of criteria for

it and it has been known to harbour people who have been subsequently

correctly diagnosed (with, for example, Hypothyroidism, Coeliac, Crohns,

Lupus, Lyme, Bechets, Myasthenia Gravis, MS and, of course, there will

be others and unknowns), thereby delaying possibly suitable treatment

for them. It is very likely that Chronic Fatigue Syndromes contain

people with M.E. because, since 1988 and especially in the UK since the

NICE guidelines of 2007, doctors have been told to prefer CFS. Diagnoses

have been changed on medical records from M.E. to CFS in obedience.

Yet researchers, having some reputation and influence, refer to Chronic

Fatigue Syndrome as, " This illness ... " as though it is a single

illness. others use a conjoined term, either way, CFS/ME, as though M.E.

is one of a number illnesses under the umbrella of CFS (though I have

never seen any other than M.E. so added after CFS/), or as ME/CFS, as

though a collective term can somehow be a subset of M.E., especially

when M.E. is, at the same time, said to be included within CFS. Most

astonishingly, some allow " all of the above " (and even more, as

synonyms, such as Post Viral Fatigue Syndrome, Chronic Fatigue Immune

Dysfunction) and more than one set of criteria in the same study. I have

never seen such a contaminated hotchpotch tolerated in any other area of

study.

In plain layman's terms, we are not comparing like with like. Not only

is it logically untenable, studies which proceed, using any of the above

will inevitably be invalid and unreliable. Most importantly, conclusions

drawn about recommendations for treatment may not only be ineffective

for people with M.E. but, in some cases, irrecoverably harmful. Such

cautions have been issued by research scientists since 1988, when

Chronic Fatigue Syndrome was born (Holmes et al., Chronic Fatigue

Syndrome: A Working Case Definition, Ann Intern Med. 108:387-389, 1988)

but stubbornly ignored.

There isn't a fence to sit on. Unless you embrace Myalgic

Encephalomyelitis (and I mean regard the World Health Organisation

definition ICD-10 G93.3 and the International Consensus Criteria as

merely a starting point and accept that nothing is sacrosanct - not even

the name Myalgic Encephalomyelitis) you, by default, permit a level of

contamination that is sufficient to render conclusions not only

untrustworthy but perilous.

In stark contrast, the M.E. Community Trust.org is dedicated to

increasingly purifying the group of people most likely to have an

illness that is best described as Myalgic Encephalomyelitis by

eliminating type 1 and type 2 errors of omission and commission (that

is, not excluding people who should be in and not including people who

should be out) as a solid foundation. It would be of serious concern to

think that researchers do not appear to know these High School textbook

rules of experimental design; even more worrying if they did but thought

they did not apply to them.

Delays in progress, moving forward, can be due to inertia of people

affected by M.E. not being sufficiently vocal or writing in support of

us, as well as by reverse thrust, in the opposite direction, by the old

guard CFS aficionados. It doesn't have to be aggressive but it does make

it adversarial: If they will not dissociate their conclusions from M.E.,

we shall have to divorce ourselves from this partner enforced upon us in

a shotgun wedding. We shall challenge in every stepwise progression that

is made necessary by lack of response, (1) research proposals, (2) work

in progress, (3) pre-publication stage and (4) if published, we shall

call upon the publishers to retract, using the precedent of the XMRV

saga (Retraction of Lombardi et al., Science 326 (5952) 585-589, 2009 in

Science, 23 December 2011 --

http://www.sciencemag.org/content/334/6063/1636.1.full?sid=75056ed2-3fe1-43bd-88\

00-230299c64209)

for the same principle of contamination.

It would be better if they were to learn later rather than not at all.

If we are ignored by people, who have some motive considered more

important to them than people affected by M.E. - such as career interest

or profit motive - then the work is not only logically and

scientifically but also morally untenable and things are even worse than

I believe.

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

ME Community Trust.org