From:
DEnlander@aol.com Letter to Daily Telegraph, London
~~~~~~~~~~~~~~~~~~~~~~
Letter to Editor
Daily Telegraph
London
21 Mar 2008
Sir,
Your article this week on Gene research in Myalgic
Encephalomyelitis by Dr Jonathan Kerr in St George's
Hospital was a breath of fresh air in the stale
atmosphere of UK government funded research.
Myalgic Encephalomyelitis and Chronic Fatigue
syndrome are commonly referred to as M.E. and
C.F.S.
In 1955 Dr Melvin Ramsay reviewed a cohort of
young doctors and nurses in the Royal Free Hospital
in London and published a report relating to their
massive debilitating fatigue. Over the years it has
been shown to be a physical disease.
The cause is obscure, this obscurity has been
masterfully used by psychiatrists to claim that the
disease is a manifestation of a psychiatric condition,
leading to an imagined problem. What arrogance !
The esteemed Royal Society of Medicine (RSM) plays
to this theme by running a conference next month on
ME / CFS. The speakers are dwelling mainly on
psychiatry, rather peculiar for a Society of Medicine.
Most of the estimated 190,000 patients in the UK
who suffer from this disease are appalled. A large
number of them have applied for a demonstration
permit outside the RSM to bring this wrongful thrust
to the nation's and RSM's attention.
The following week, May 6th, a conference in ME /
CFS will take place at Cambridge University where
the latest methods of diagnosis and treatment will
be defined. Dr Kerr will speak on the Genome in ME /
CFS.
Dr Klimas, a noted researcher and clinician in Miami
Florida, will speak on new developments and
diagnostic methods and I will speak on the methods
of treatment both in the UK and the USA.
As far as I know the RSM has not noted these
physical aspects and has not altered its agenda in
the April conference.
The government through NICE continues to waste
money on proven bad methods of treatment, based
on forced exercise therapy which, in a large number
of cases, cause relapse.
Research on the physical basis of the disease has to
be funded by private foundations, CFS Research
Foundation, ME Research UK and patient money.
Surely, by now, the Government should
be embarrassed.
Derek Enlander MD, M.R.C.S., L.R.C.P.
New York
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From: ME Free For All.org <drjohngreensmith@mefreeforall.org>
Re: ME: 'Invisible disease' is now easier to read
(Daily Telegraph, 18 March 2008)
I was very pleased to see such a good letter from
Dr Derek Enlander, in response to this article
about Dr Jonathan Kerr's work in the Daily
Telegraph this week (ME: 'Invisible disease' is
now easier to read, Daily Telegraph, 18 March
2008).
Here's mine. If you have one, which may help one
of us get published and which we would like to put
on our website whether yours gets chosen or not,
the e-mail address is
dtletters@telegraph.co.uk Best wishes
John
``````
Daily Telegraph Letters.
I believe that your newspaper is the only one in
Britain, this week, to cover, arguably, the most
promising research in M.E. (ME: 'Invisible disease'
is now easier to read, Daily Telegraph, 18 March
2008), a measure of the neglect which, I am sad
to say, is reflected in those who make the
decisions and control the purse strings.
There has been ample research evidence for M.E.
as a discrete illness, with a physiological cause,
since it was first named (Myalgic, pertaining to the
muscles, encephalo-, relating to the brain and
spinal cordand -itis, meaning inflammation) by the
late Dr Melvin Ramsay in 1956 and it has been
endorsed by the World Health Organisation
(WHO), as a neurological illness, since 1969.
The overwhelming experience of lassitude is much
more than the word "fatigue" alone can express
and, although, it is possible to have a psychiatric
illness in addition to M.E., it is rare and it is neither
a prerequisite cause nor effect of it. So, it would
seem quite logical and uncontroversial to pursue a
bio-medical approach to research, rather than a
psycho-social one.
Yet the Government's advisers, both before and
since the Chief Medical Officer's Report on M.E. in
2002, when Sir Liam Donaldson found it a "real
illness for real people, left in the wilderness too
long", who are dominated by psychiatrists, have
pressured doctors into preferring Chronic Fatigue
Syndrome, even though patients say that it does
not present like normal tiredness and is not
refreshed by sleep.
They have tampered with the M.E. entry in the
British version of the WHO handbook (though it
remains untouched in other countries) and they
have recommended two treatments, on the basis
of questionable research evidence, one of which,
Cognitive Behaviour Therapy (CBT) has no lasting
benefit for people with M.E. and the other,
Graded Exercise Treatment (GET), which may
leave some patients irrecoverably worse.
They say that they do not believe that M.E. is "all
in the mind" and that they do promote biomedical
research but we have seen no evidence of funding
for the latter and every penny of the £8.5 million
to start, then millions more each year to sustain it,
has gone into a network of clinics offering these
management techniques.
Since most patients are treated by psychiatrists,
using treatments developed for psychiatric
illnesses, most often in psychiatric units of
hospitals, it is hard to think how otherwise they
would treat them if they did believe it was of
psychiatric origin.
Meanwhile, work of the pedigree of Dr Jonathan
Kerr's has to depend on charity. The Medical
Research Council (MRC) has turned down every
set of biomedical research proposals offered.
It is understandable how frustration amongst M.E.
sufferers, who remain ill sometimes for decades,
sometimes boils over and is directed outwards in
anger at the individuals who have steered things
this way; sometimes that emotion simmers under
a lid and is turned inwards until some people
choose to take their own lives rather than endure
the suffering any longer.
The situation does not look set to change. Indeed,
a Royal Society of Medicine (RSM) conference to
be held at the end of next month (28 April 2008),
to which selected delegates have been invited and
others told that they should not attend, is
expected to recommend that this unproven
service should be expanded.
The M.E. Community will hope and pray that it can
scrape together sufficient funding to support work
to find the solution to M.E. before much more
harm is done to its sufferers.
Yours sincerely
drjohngreensmith@mefreeforall.org Dr John H Greensmith
Elizabeth Fitzsimons: (619) 542-4577;