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5 January, 2010
Open letter to Professor Sir Liam Donaldson, Chief Medical Officer:
An appeal to think about ME before he retires in May 2010.
Dear Sir Liam,
In 2002, at the end of a three year inquiry into the dreadfully
disabling illness ME (Myalgic Encephalomyelitis) you said on
television: "ME is a real illness for real people ... in the
wilderness too long."
Indeed, never mind 40 days and 40 nights, some had been in it for
more than 40 years. Your speech had immediate positive impact. The
next day people in shops who had no one in the family with it were
talking about ME. A person shouted across the street to me: "You
know that illness you've got? .... It's real." ME sufferers had new
hope.
But, ironically, seven years on, ME has been robbed of its distinct
reality and sufferers remain even more deeply entrenched in that
wasteland amongst an even greater number of lost souls. This has
come about because of a tangled web of bad practices built on a
fundamentally rotten foundation that must be unpicked before we can
find our way out of this desert.
The keystone fault arises from combining ME, which does have post
mortem evidence of inflammation of the spinal cord, as a real
physiological illness, but which is not fatigue, nor a psychiatric
illness, with several other conditions of varying physical and/or
psychiatric origins under one diagnostic label, Chronic Fatigue
Syndrome (CFS).
This has the effect of at least doubling the number of nomads in
this wilderness and polluting the data set, impeding progress
because it is likely that any conclusions drawn exclude most people
with ME. Until we separate this CFS/ME hybrid, which should never
have been wrought, there will be no trustworthy conclusions about
ME. It's a waste of time, money and energy.
All of the wanderers are offered only one route out - management of
their illness with Cognitive Behaviour Therapy (CBT) and Graded
Exercise Treatment (GET) - whether it is advisable for them or not.
It is perhaps not surprising since a large number of delegates at
the various working parties are the same psychiatrists who advise
the government that the best treatments are the ones that they
themselves administer.
Well they would, wouldn't they? And they have. In 2004, every penny
in the research pot was spent on a network of clinics, which offer
only these two treatments. And, in 2007, the strategy was enforced
by the NICE (National Institute for Health and Clinical Excellence)
guidelines, a copy of which was sent to every GP, instructing them
that CFS is the "preferred" term and advising them to refer patients
with CFS/ME to the clinics.
ME sufferers don't believe for one moment that this is a process
carried out equally by patient and doctor. Diagnoses of ME were
altered to CFS, even though patients' symptoms had not changed.
The spectacular results claimed for CBT and GET depend on the say-so
of advocates and practitioners, unsupported by any independent
evidence. The latest review (Twisk & Maes, September 2009) confirms
that all the research to date shows that CBT is ineffective and GET
makes matters worse for ME sufferers. Yet, astonishingly, there are
calls for even more funding to expand the service.
Few, if any, voices are heard in opposition. Government ministers
are perhaps relieved that they can be said to be offering something
rather than nothing. Busy GPs may assume that the NICE guidelines
are firmly scientifically based and not even check the literature.
Those with any concerns may remain silent rather than question the
medical establishment and patients who have been hurt may be
reluctant to say so for fear of being left even more isolated. The
wailing and gnashing of teeth is still audible for all but deaf
ears.
But even when advocates and practitioners have talked it up and
ignored any criticisms, the results are plain: people with ME are
remaining ill, not returning to work or school and resuming their
normal lifestyles. The bigger bundle of Bedouins can't hide that.
Yet, this is the only route that the only camel train is taking. The
reason that there is a waiting list is not due to its popularity or
success; there is a queue because there is no other choice and
reluctant travellers are shoved on board.
So it appears that, although you suggested the journey, you will not
be the Moses of Chief Medical Officers to lead us out, while on your
watch. But may I plead that, before you go, you re-establish the
discrete real identity of ME, by appointing some independent guides
as a balance to the unwise men rushing headlong, not stopping to ask
the way from people who may know a better route, who will listen to
the unwilling pilgrims still trapped and re-point the direction
sign, via biomedical research, along the right path to the exit
marked cure.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
www.MEFreeForAll.org
36a North Street
Downend
Bristol
BS16 5SW
United Kingdom
+44 (0) 117 956 0150 |
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