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

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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@...

Dr H Greensmith

ME Community Trust.org

36a North Street

Downend

Bristol

BS16 5SW

United Kingdom

+44 (0)