Do Something

1. Sign a Petition

Click here to sign the petition against the PACE study in the UK:

The published paper of the PACE trial study into ME is a “Travesty of Science and a Tragedy for people with ME”

In light of the knowledge that the study has now been exposed as seriously flawed- in that it did not actually study people with ME -we the undersigned demand that the authors withdraw the paper with immediate effect.

In an unprecedented move the PACE trial was part funded by the Department of Work and Pensions. With final costs now reported to be between £4 and £5 million and a time scale of 8 years to complete it cannot be said to be a “value for money” exercise. The survey outcome has influenced the guidelines for ME produced by NICE (National Institute for Clinical Excellence), the ME services determined by BACME (British Association for CFS ME) and benefit support by the DWP (Department of Work and Pensions).

This petition will be presented to the Editor of the Lancet, the DWP, the MRC, the APPG for ME and as many MPs that we can identify who have an interest in ME.

 

2. Write to your MP (UK)

 

Copy and paste the below:

 

Your address

Date

 

Dear (name of MP)

I am contacting you as one of your constituents, using this form letter as I am too unwell to write a more personal one.

I suffer from M.E. (Myalgic Encephalomyelitis) and I’m concerned that the main NHS treatments on offer for my disease are the psychological therapies of Graded Exercise and Cognitive Behavioural Therapy. There is pressure for me to attend my local hospital where these therapies are offered at CFS/M.E. clinics; this pressure is causing my health to deteriorate. These therapies are as a result of the Chief Medical Officer’s Report in 2002 and reinforced more recently by the NICE Guidelines for CFS/M.E. (CFS stands for Chronic Fatigue Syndrome which isn’t necessarily the same disease that I have, of M.E.)

It is unjust that only psychological therapies are available for M.E. on the NHS when the Government states that it recognises M.E. as a neurological disorder.[i]

It is also unjust that the NHS offers mainly psychological therapies for M.E. when there are over 2,000 international papers demonstrating that M.E. is an organic disorder,[ii] affecting all three nervous systems as well as the immune, endocrine, cardiac systems and vascular disruption.[iii] The World Health Organisation has classified M.E. as a neurological disorder since 1969.[iv] (It is incongruous that the World Health Organisation is implemented as guidance for Swine Flu, yet is ignored by this country in its classification of M.E. as a neurological illness.)

The recent Canadian Criteria for M.E./CFS demonstrates numerous tests which can be performed in aiding a diagnosis for M.E, mostly brain scans and immunological markers.[v] Yet none of these are available over here on the NHS.

Scientific research has been ignored in the setting up of these CFS/M.E. clinics, especially the worsening of brain and muscle function after exercise for M.E. patients.[vi] International medical opinion and patient surveys have also been ignored which demonstrate that Graded Exercise and CBT are at best ineffective and at worst cause deterioration of M.E. sufferers.[vii]

Please can you do one or more of the following to change this dire situation?

1) Support the following:

a) the urgent need for an M.E. diagnostic test

b) the urgent need to change the Dept. for Work and Pensions’ definition of M.E., which disgracefully categorises it as a psychosocial illness.

c) to challenge the Medical Research Council in its overwhelming prejudice in accepting psychosocial applications and rejecting biomedical ones for M.E.

d) to challenge the recent NICE guidelines which have placed M.E. further in psychology.

Also, your support would be appreciated in the following: 2) to ask David Amess (MP Con.), temporary Chair of the All Party Parliamentary Group on M.E., that more speakers representing biomedical evidence of M.E., such as Prof. Malcolm Hooper of Sunderland University are invited to the meetings, with their valuable scientific research. Also, that members of the 25% M.E. Group for severe sufferers are invited who have conducted patient surveys of effective and non-effective treatments. At present, none of these persons have been invited to the APPG on M.E: only those groups who are sympathetic to psychological therapies have been invited.

3) to challenge the unsound APPG on M.E. report (March 2010) regarding the CFS/M.E. clinics on the NHS. This report praises the NICE Guidelines and still supports CBT and Graded Exercise despite patient surveys presented to them showing that these treatments are often damaging.

4) to ask the CMO to steer the current NHS M.E. clinics into biomedical, not psychosocial centres.

If you could act on either one or more of the above requests, you’ll be doing me and thousands of other M.E. sufferers a huge favour.

Your efforts will be a ray of hope amidst the prejudicial circumstances surrounding M.E.  Thank you.

Yours sincerely,

(your name)

 


[i] Quote in writing from Ann Keen MP, Parliamentary Under Secretary of State, in a letter to Ann Widdecombe MP, 8 November 2007. M.E. has also been recognised by the UK Department of Health as a physical disorder since November 1987 (Hansard, 27th November:353)

 

[ii] The Group On Scientific Research Into Myalgic Encephalomyelitis (The Gibson Parliamentary Inquiry), Hooper, Marshall, Williams 2005, page 6, quote by Prof. Anthony Komaroff

 

[iii] Disturbing Discrepencies In Statements Made By Prof. Simon Wessely in relation to M.E./CFS: some questions and answers of which the Gibson Parliamentary Inquiry Needs To Be Aware.

Prof. Malcolm Hooper, Eileen Marshall, Margaret Williams 4th January 2006

 

See also, A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome, by Byron Hyde MD, May 12 2006, as presented  at the London Conference

 

[iv] World Health Organisation – International Classification of Diseases 10-G93.3

 

[v] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document, 2005, published by Carruthers and van de Sande, page 18,  ISBN 0-9739335-0-X

 

[vi] The Negative Effects of Exercise on an M.E./CFS Dysfunctional Brain, page vii, The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde M.D., The Nightingale Research Foundation.

 

See also, Oxidative stress levels are raised in Chronic Fatigue Syndrome and are associated with clinical symptoms, Kennedy, Spence, Belch, Free Radical Biology & Medicine 2005:39:584-589

 

[vii] A Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, The Nightingale Research Foundation, Vol. 1, Issue 7, revised, 1992, page 25

 

see also, Analysis Report by 25% ME Group March 2004, www.25megroup.org

 

This form letter has been supplied by The Grace Charity for M.E.

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