Since 1st April 1995, the World Health Organisation’s listing of M.E. (Myalgic Encephalomyelitis) as a neurological disease (ICD-11 8E-49; formerly ICD-10 G93.3) has been mandated for NHS implementation.
In 2019, we received this letter from NHS Digital (Data Co-Ordination Board) which confirms that the NHS still mandates M.E. as a neurological illness: Click HERE to see the Letter
Use the above facts when faced with scepticism of M.E. and especially if the illness is treated as a behavioural/psychiatric illness.
N.B. On October 29th 2021, NICE finally released the new guidelines on ME/CFS, after a 6-month delay. We are thrilled that GET (Graded Exercise Therapy) is no longer promoted as a treatment; also that CBT is no longer promoted as a cure.
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The full catalogue of papers by Prof. Malcolm Hooper and Margaret Williams can be found at margaretwilliams.me There are other authors found here also, including Eileen Marshall.
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Letter to help M.E. sufferers access priority shopping times in-store or online. April 2020
Click to Download the Word Document 20Kb
Click to Download the PDF Document 210Kb
May 2020 update: some supermarkets have added further illnesses to their priority lists, a result of legal action against shops breaching the Equality Act 2010.
Vaccines and M.E. research paper, including the Covid 19 vaccines:
Click to Download the Word Document 18Kb
Click to Download the PDF Document 330Kb
Read Margaret Williams’ statement about NICE delaying their guidelines:
https://www.margaretwilliams.me/2021/wilful-ignorance.pdf
Since her letter, the NICE guidelines were released in October 2021
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Hospital Booklet Information for hospital staff regarding treatment of patients with M.E. (Myalgic Encephalomyelitis).
If anyone would like a hardcopy, let us know and we’ll send you one.
Click to Download the PDF Document 5.09 Mb
Click to Download the Word Document 5.09 Mb
Dental Leaflet Information for M.E. sufferers and their dentists. The leaflet can be printed both sides, then folded into thirds, with the tooth image at the front.
Tips: print landscape; both sides of paper; PDF may need you to ‘shrink to fit’.
Alternatively, we can send you a paper copy through the post.
Click to Download the PDF Document 193Kb
Click to download the Word Document 46Kb
MP Form Letter We have also produced a form letter for you to send to your MP. This letter may also help to explain your circumstances with M.E. to people other than your MP.
Click the link below to download a copy.
To contact your MP, see ‘Links‘ page.
Click to Download the Word Document 40Kb
Click to Download the PDF Document 95Kb
Saying No Can Be Positive Empowers sufferers who wish to refuse psychological therapies.
Click to Download the Word Document 146Kb
Click to Download the PDF Document 189Kb
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Paper: ‘Knowledge in the hope of protecting M.E. sufferers from unnecessary sectioning’
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Click to Download the PDF Document 166Kb
Statement demonstrating that M.E. sufferers DO NOT have a phobia towards exercise, in response to the Jan. 2015 Lancet
Click to Download the Word Document 18Kb
Letter warning against exercise cure for Long Covid
Link to letter from the Grace Charity for M.E. which was published by the British Medical Journal Rapid Response in April 2021. It warns those with post-Covid (known as long Covid) to avoid a cure which is based on exercise.
https://www.bmj.com/content/370/bmj.m3489/rapid-responses
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The National Archive Document BN141/1
The National Archive Document BN141/1
This document, called the DWP file (Department of Work & Pensions) is 235 pages long and consists mainly of correspondence from the early 1990s. It was released into the public domain in April 2012 after a successful FOI request (Freedom of Information).
NB: Unfortunately, this document is backwards chronologically, so you might have to start on the last page and work your way forward!
Document summary
Much of the file is correspondence pertaining to a state benefit, Disability Living Allowance, in the early 1990s. Various M.E. patient groups are shown to be unhappy with the medical explanation of M.E. in the DLA handbook and are pressing to have the entry changed to a more physical, neurological one.
This file demonstrates that some Government Ministers were aware of biomedical evidence of M.E. (mainly pertaining to muscle damage) yet they were ultimately influenced by the psychosocial thinking of certain doctors. The Government was reminded of how much money they might save by rejecting the belief that M.E. is a neurological illness with possible lifelong disability.
The Government was ready to make M.E. separate from other chronic fatigue syndromes by classifying M.E. as neurological in the DLA Handbook (Disability Living Allowance). But just as it seemed ready to do this, it appears to do a U-turn and keep M.E. under the general heading chronic fatigue syndromes, where the description of M.E. is open (sadly and incorrectly) to a psychological interpretation.
Pages of particular interest are pages 5; 15-16; 17-18; 27; 95; 163-167; and 235.
NB: The Crown Copyright instructions on page 1.
STATEMENT ON THE UK CFS/ME RESEARCH COLLABORATIVE (in existence since April 2013)
The Grace Charity for M.E. is not in agreement with the setting up of the recently appointed organisation, the UK CFS/ME Research Collaborative (CMRC).
Those representing the truth of M.E. (i.e. the biomedical perspective) cannot ‘work alongside’ those representing the mistruths of M.E. (i.e. the biopsychosocial perspective). There is no compromised position to be found between these two opposed views because compromise means to have something in common. How can the truth of M.E. as an organic illness with real pathology, find any common ground with those who believe it is an illness caused/perpetuated by wrong psychological beliefs and cured by CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy)?
A similar approach with attempting to find ‘common ground’ was tried in 1998-2002 with the Chief Medical Officer’s Report. Proponants of both the biomedical and biopsychosocial perspectives were on the Key and Reference Groups. What resulted from the CMO’s Report was the setting up of CFS/ME ‘clinics’ from a biopsychosocial perspective, offering CBT and GET; some were (and still are) clearly in the Mental Health section of hospitals. These ‘clinics‘ were a tragedy for the truth of M.E. and dashed the hopes of many M.E. sufferers and their families.
In addition, the recent UK CFS/ME Research Collaborative may give an appearance of condoning the biopsychosocial group and giving them unmerited credence.
Perhaps it would be better if the M.E. research groups and charities joined together instead, as one strong biomedical voice to oppose the biopsychosocial groups, rather than ‘work alongside’ them? Then, by being a force refusing to ‘dumb down’ M.E., they might be in a stronger position to support the brave doctors who have paid unjust penalties from the GMC for their treatment of M.E. sufferers from the correct perspective – a biomedical one.
Note: You will need Adobe Acrobat Reader to view the PDFs. You can download this for free by clicking here.