FW: Subject: RiME Letter to Daily Telegraph 10/2/10

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From: rimexx@...

To: rimexx@...

Subject: Subject: RiME Letter to Daily Telegraph 10/2/10

Date: Wed, 10 Feb 2010 21:46:52 +0000

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Campaigning for Research into ME (RiME)

RiME is sending the letter below to the Daily Telegraph.

If you also want to write - letters to dtletters@...

ME: Biomedical Research: Appearances can be Deceptive

Sir,

A letter appeared Feb. 6 entitled 'Breaking the ME Enigma'. In the final

paragraph it says, 'Above all, we should fund biomedical research to resolve the

enigma of the underlying pathology of this illness... '

This is all very well, but please note that three of the signatories are

officers of the All Party Parliamentary Group on ME (APPG), with two others -

the ME Association and Action for ME providing the secretariat. Over the eleven

years the APPG has existed, the British Government has not put a single penny

into ME biomedical research, preferring instead to fund psychological models of

treatment, notably Cognitive Behavioural Therapy.

The APPG has to date devised no effective strategy for addressing that

deficiency.

ME patients are frustrated in that the APPG does not adhere to accurate

definitions of the neurological illness Myalgic Encephalomyelitis.

Disappointingly, it supports Government Reports which are more to do with poorly

defined fatigue and which recommend cheap, inappropriate options (psychological

models of treatment) as far as ME is concerned.

The pivotal issue of biomedical research rarely appears on the agenda at APPG

meetings; indeed, recent meetings have been largely about the clinics set up

following the CMO Report on 'CFS/ME' 2002; clinics which offer the type of

treatment described above and which ME patients throughout England condemn as

inappropriate, if not irrelevant, to their plight.

RiME wrote to all 646 MPs in 2008 asking whether or not they think the

British Government should be funding research into the underlying physical

causes and disease process of ME. Only 66 have so far ticked the 'Yes' box. Many

members of the APPG, including its Chair, have not even replied.

Campaigning for Research into ME (RiME)

www.rime.me.uk rimexx@...

________________________________________________________________________________\

____________

'Breaking the ME enigma' Daily Telegraph, 6 February 2010

SIR

–

The death of Lynn Gilderdale and the humane verdict in the trial of her

mother brought home to many people for the first time what a devastating illness

myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a

million people with ME in Britain experience not only extreme pain and

disability, but also incomprehension, ignorance, lack of sympathy and at times

outright hostility, not only from the public but also from professionals

responsible for their care.

Such lack of understanding even extends to

blaming parents for the severity of their child's illness.

It is time the

nation began to take ME seriously. Provision of adequate clinical and other

services by properly informed and sympathetic professionals is currently subject

to a postcode lottery. Such provision should avoid inappropriate treatments, and

range from support for home tuition for school-age children to respite care for

the severely affected.

Above all, we should fund biomedical research to

resolve the enigma of the underlying pathology of this illness. We should build

on recent scientific advances to develop effective treatments, so that no one in

future need experience the pain, isolation and despair that were Lynn

Gilderdale's fate.

Countess of Mar Secretary, All Party Parliamentary Group on ME

Dr Neil

Abbot Operations Director, ME Research UK

Jane Colby Executive Director,

The Young ME Sufferers Trust

Anne Faulkner Hon Director, CFS Research

Foundation

on Chairman, BRAME

Malcolm Hooper Emeritus

Professor of Medicinal Chemistry, University of Sunderland

Andy Kerr

MSP

Dr Kerr Consultant Senior Lecturer, St 's, University

of London

Simon Lawrence Chairman, 25 per cent ME Group

Kathleen

McCall Chairman, Invest in ME

Dr Nacul Consultant in Public Health,

London School of Hygiene and Tropical Medicine

Professor Pheby

National ME/CFS Observatory

Neil Riley Chairman, ME Association

Dr

Shepherd

Dr Nigel Speight

Sir Spencer Chief Executive Officer, Action for

ME

Des MP Chairman, All Party Parliamentary Group on ME

Dr

Weir

-Jane Willows Chief Executive Officer, Association of

Young People with ME

Stunell MP Vice Chairman, All Party

Parliamentary Group for ME/CFS

_________________________________________________________________

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