SITES AND USE IN NEWSLETTERS
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@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
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