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Congratulations to Sue Waddle of Invest In M.E. for getting her letter, "Truth about ME" (text below), in response to "Could ME be caused by too much adrenaline?" (Daily Mail, 9 January 2007) published today, 12 January 2007.

I know that several people submitted letters, alarmed at the journalist Roma Felstein's assertion that "ME is the lay person's term for an illness medical professionals call Chronic Fatigue Syndrome (CFS) ... "

I don't know whether this is of the journalist's own invention, or whether they were told it by someone in the M.E. community who should really know better.

Sue quashed it but I fear that, now being in print, other journalists will copy it elsewhere until, with repetition, this myth gains belief.

We shall have to keep our eye on this one.

Cheers
Dr John Greensmith


Sir,

I am pleased for the Gough family who have had such a good result for their
illness by using a "simple mind programme".

However your article highlights the immense ignorance and misinformation
associated with this illness, Myalgic Encephalomyelitis, and perpetuates
some of these inaccuracies.

You say that M.E. is the term used by lay people to describe what doctors
call "Chronic Fatigue Syndrome." Nothing could be further from the truth.

M.E. is the term used by experts here and around the world, many of whom
will be attending the International Conference on M.E. in London in May. It
is also recognised by the World Health Organisation. I would like to take
this opportunity to invite Roma Felstein to this Conference.

Who would dream of re-naming or re-branding Diabetes as "Chronic Sweet Tooth
Syndrome?" Yet this is what has happened to M.E. - it has been "re-branded"
by psychiatrists who have decided to claim it as a psychological problem. It
is not very long ago that M.S. and Parkinson's disease were also dismissed
as psychological manifestations.

In November an Independent Parliamentary Inquiry into M.E., headed by Dr Ian
Gibson MP, concluded that ring-fenced money for bio-medical research must be
made immediately available, as happened with AIDS.

In fact, M.E affects five times as many people as does AIDS but can have a
much more devastating impact on quality of life. Dr Gibson said that
research must be made a priority and suggested that £11 million should be
made available for research to redress the balance in an illness where too
much emphasis has been put on psychological "coping strategies". He accused
the Medical Research Council of merely "paying lip-service" to the call for
bio-medical research.

The report also called for an independent scientific committee to be
established to oversee all aspects of research, as well as an inquiry into
the vested interests of insurance companies whose advisors also act as
advisors to the DWP. Dr Gibson recommended an investigation of these vested
interests by a standards committee because too often, he says, patients have
to live with the double burden of fighting for both their health and their
benefits.

If Lightning Therapy is so effective at "curing" a devastating neurological
illness which affects all major organs and body systems then it is
imperative, as Dr Neil Abbott of ME research UK commentated, that large
scale testing is conducted.

Until that time it remains in the realms of quackery and it is deeply
offensive to extremely ill patients to suggest that this is a cure for a
dreadful illness.

Sue Waddle, Invest In M.E.