From a letter to Nick Clegg

I wrote to Nick Clegg, Deputy Prime Minister ,  yesterday. Here is an extract :

"Before the Election you set out the excellent  Liberal Democrat position on
ME :

"The Liberal Democrats have long argued that
funding and research must be focused on the `bio-medical' factors
involved and not just simply managing the `psychological' issues.

Whilst I welcome the fact that NICE conducted an investigation into
ME/CFS, I do understand and empathise with the concerns raised about the
findings. The recommendation that patients with ME/CFS be treated using
an `Activity Management Programme' made up of Cognitive Behavioural
Therapy and Graded Exercise Therapy does not follow the World Health
Organisation guidelines which categorise ME as a neurological condition.
In failing to recognise the bio-medical problems of ME sufferers, the
NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly
defined condition like ME, the Liberal Democrats believe in the
establishment of an independent scientific committee to oversee all
aspects of ME research. We would also like to see the government and the
Medical Research Council work with ME sufferers and biomedical
researchers in order to achieve a proper understanding of the condition,
challenge unjust perceptions and consider the issue of research funding.

Whilst we welcome the establishing of local centres to focus on ME, we
feel the NHS is still too centralised and too unresponsive to the needs
of patients and families. We believe the special needs of those
suffering conditions like ME can be better addressed by empowering
patients and making the NHS more accountable at local level."

(Co-Cure 4th/5th May 2010

For the first time in many years I have a sense of hope.  I am writing
to urge you to use your  position  in Government to help bring about
the  biomedical investigations , tests,  treatments  , consultants and
respect for this disease, that are so desperately needed for ME

As long as ME is shackled to "fatigue" and a mental health
interpretation , without proper or adequate diagnostic criteria and
as long as psychiatrists who view ME as either non-existent or a
mental-health condition  continue to advise key Government groups, ME
research and provision will be seriously undermined by  this as well
as by  the vested interests raised by the Gibson Parliamentary
Inquiry, but never addressed.

Please help us and all ME sufferers.  Please promote the much needed
changes in attitude and practice  required. My wife does not want to
die, as so many have done already,  from ME.

This Election has been all about change. Change cannot come soon
enough for ME sufferers and carers like myself."

Yours sincerely,

Greg Crowhurst


  1. Great letter, Greg. As you say, we have some hope at last.


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