Re: Mother-of-two tells how M.E. left her bedridden and in agony (ish Daily Record, 27 January 2012)

[Guest guest]

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Letters to the Editor.

Cc: Croce, Journalist; Dr Mickel; Holly Tomas, with

permission to copy to any interested parties.

Remarkably, there has never been a test for the efficacy of any of the

treatments - including those recommended on the NHS, alternative

therapies, supplements and non medical tools - offered as a cure, or

significant recovery, to sufferers of M.E. (Myalgic Encephalomyelitis)

by independent researchers, who have no career interest or profit motive

in the direction of results of any trials. The M.E. Community Trust.org

is determined to break this duck and seeks appropriate help here to

support its aim.

Tests for the claims of treatments, of which Mickel Therapy

(Mother-of-two tells how M.E left her bedridden and in agony, ish

Daily Record, 27 January 2012 --

http://www.dailyrecord.co.uk/news/health-news/2012/01/27/mother-of-two-tells-how\

-m-e-left-her-bedridden-and-in-agony-86908-23722477/)

is just one, are clouded by: unproven scientific theory; the requirement

of patient's belief for successful outcome and being conducted by people

with a vested interest in outcome. These matters need addressing by a

more objective experimental design.

But there is a more fundamental source of contamination of subject

sample, which mars all research that must first be dealt with. In the

documentary (An Sgiths Nimheil/The Toxic Tiredness, BBC Alba, 30 January

2012 -- http://www.bbc.co.uk/programmes/b01b1z0l) Dr Mickel says

that he " clumps together " Chronic Fatigue Syndrome (CFS), M.E. and

Fibromyalgia as " chronic fatigue " illnesses. Incredibly, so do all

studies have an incomparable selection of variously defined CFS and

conjoined CFS/ME. In the simplest of terms, there are few High School

text book rules of experimental design that these do not break and they

are just not comparing like with like. It is essential, therefore, that

we define a more pure group of people likely to have M.E., quite

separate from the nebulous " fatigue " and its bookends " chronic " and

" syndrome " , as a necessary foundation, without which any work would be

invalid and unreliable, the results untrustworthy and any attempt to

apply findings to people with M.E. (who probably were not included), at

least disappointingly ineffective and, in some cases, irrecoverably harmful.

It is encouraging that Dr Mickel says he has been making strenuous

efforts to secure a robust test of his therapy, using a Randomised

Control Trial (as, coincidentally, does Phil , inventor of the

Lightning Process), though when we have been in touch with them and

others, original enthusiasm has waned and fizzled out.

In the absence of their discovering such a rigorous design elsewhere, I

would like to propose a pilot study to address every one of these faults

by: (1) defining a group of people, most likely to have M.E., quite

separate from CFS and its variants; (2) having the experimental design,

subject selection and statistical analysis agreed, beforehand, in a

consultation preview period, with all interested parties, including the

inventors, to avoid any quibbling afterwards; (3) the work monitored by

independent individuals, with no career interest or profit motive in the

direction of outcome, such as a representative of your newspaper; (4)

any funding to be minimised by labour being given without financial

reward and costs shared to be affordable.

If the results showed a considerable percentage of subjects, perhaps

more than two-thirds, had measurably improved following treatment, for

example by a return to work and resumption of previous social life,

then, subject to replication with larger samples, we should recommend

that this treatment be freely available on the NHS; if, on the other

hand, the results were less than chance, or disappointingly small, again

after replication, we would expect advocates and practitioners to

withdraw claims of efficacy for M.E. We should also expect to do

follow-up studies to see that they had not relapsed which,

astonishingly, have never been done.

We shall know from the replies (or lack of them) from the people

identified here - researchers, inventors, practitioners, press

representatives and any other interested parties - the actual level of

enthusiasm and sincerity that there is for truly rigorous scientific

testing of all treatments, not only Mickel Therapy, offered for people

with M.E. In thee absence of any such willingness or cooperation to

help, we are determined to progress with such trials at the rate our

resources will permit.

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

ME Community Trust.org