LETTER, Re: The M.E. death threats story (sent 4 August 2011)

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We are currently drafting an open letter, to be co-signed by

representatives of people with M.E. (Myalgic Encephalomyelitis), which

will be sent to all media, especially those who covered the M.E. " death

threats " story (first in the British Medical Journal, 22 June 2011 and

then following the BBC Radio 4 " Today " programme, 29 July 2011), It will

be a request for journalists to revisit it with a list of crucial

unanswered questions, which may substantially alter public perception

and suggest a completely different priority for future research. In

advance, may I attempt a summary of two quite diametrically opposed

views, which I hope will not be too oversimplified and sufficient to

provide a fair understanding of the roots of this furore.

It has been an unseemly bar room brawl of flailing fists, since the

first punches were thrown around 25 years ago because there are not

merely two simple arguments, or adversaries but factions within factions

and anarchic loose canons. At the risk of taking some more bruising,

from all sides, which we condemn as both unpleasant and unhelpful to

all, I shall attempt a summary:

Professor Simon Wessely and those of his school of thought and practice,

appear to be saying that people, they have bundled together, with CFS/ME

are being hostile to those researchers and practitioners, who are trying

to help them; they should accept that there isn't necessarily a physical

cause of their illness; their behaviour is likely to drive researchers

away from the filed, they should take the orthodox treatments of

Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) and

consider alternative and unproven radical treatments such as the

Lightning Process.

Representatives of the M.E. Community say that the foundations of their

work are fundamentally flawed because M.E. is a discrete neurological

illness and, logically, cannot be the same as the CFS bundle of

heterogeneous illnesses; therefore, any research work using these

polluted samples, is invalid and unreliable; any conclusions should not

be extrapolated to M.E. sufferers, who were probably not included in the

trials; researchers are not independent while pharmaceutical and

insurance companies fund their work; there is no evidence of researchers

refusing grants to work elsewhere or remain unemployed; the recommended

treatments they feel pressured to take are ineffective, or make a

majority worse, the number remaining ill for decades has not been

reduced and this monopoly accepted by successive governments, is

impeding progress towards a cure not only for people with M.E. but other

illnesses in the bundle.

I hope this right of reply will not be ignored or swept under the carpet

but then, at a later stage, the same slur repeated on a majority of M.E.

Sufferers who should not be tarred with one brush and as though no

attempt had been made to establish a proper foundation for research into

this dreadfully disabling illness.

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

ME Community Trust.org