Monday, June 11, 2012

The future of ME Community Trust.org

 
PERMISSION TO FORWARD, RE POST AND SHARE ON FACEBOOK & TWITTER.
PLEASE, AS MANY AS CAN, ALSO SUBMIT AS A LETTER TO THE EDITOR OF YOUR
LOCAL OR NATIONAL NEWSPAPER, ON MY BEHALF, FOR MAXIMUM EFFECT.

The future for the M.E. Community Trust.org

I am acutely ill with a flu-like virus, causing shivering, aches &
pains, headache and I am sleeping, irregularly, about 12 hours a day.
When awake, I am weak, unable to concentrate or function normally. Since
this is a repetitive cycle, I have decided to take an indefinite period
of time away from the work of the M.E. Community Trust.org, for the sake
of my own health and because I do not have sufficient help or support to
continue, even at the lowest practical level.

I shall return with a revamped campaign based on divorcing M.E. (Myalgic
Encephalomyelitis) from "fatigue" as part of the sleep cycle, whether as
a single word, or sandwiched between "chronic" and "syndrome". It is the
acceptance of Chronic Fatigue Syndrome (or any other name, with
"fatigue" as a component) that has been at the root of maintaining
people ill with M.E. for 25 years and there is no sign of any change so
long as it gets support for the medical and political establishments, as
well as from CFS/ME patient organisations. This is because it is:
logically untenable to consider a single illness (M.E.) exactly the same
as several other conditions (CFS), or one as a subset of the other,
either CFS/ME or ME/CFS; doing so leads to research design that is
invalid (does not measure what it purports to measure) and unreliable
(cannot be repeated within and amongst subjects) and, worst of all,
applying untrustworthy conclusions about treatments, such as Cognitive
Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) to people with
M.E., who were not tested, is at least ineffective, often harmful and
morally reprehensible.

This will require the support of a majority of the M.E. community, in
both effort and subscription to funding, or nothing will change because
those who perpetuate the CFS construct are either, ignorant of their
invalid work or, more selfishly, concerned with career interest or
profit motive of their sponsors. If we do not bring about a change,
proven by properly designed research work, I shall see it as a victory
for institutionalised bullying over patient apathy and I shall be the
latest of a number of generations of campaigners to be forced into
retirement - but at least I shall have one more last try.

Please do not contact me, with the expectation of a reply, unless it is
with practical help towards this project, for which you have the time,
energy and commitment to put more in than you take out, or unless you
have a no-strings donation (I'm thinking of £1 million, or a large part
thereof) as I cannot cope with reading messages, let alone responding to
them at this time but please do feel free to forward and republish this
letter anywhere for optimum benefit.

Best wishes
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
36a North Street
Downend
Bristol
BS16 5SW
United Kingdom
+44 (0) 117 956 0150

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