Since 1st April 1995, the World Health Organisation’s listing of M.E. (Myalgic Encephalomyelitis) as a neurological disease (ICD-10 G93.3) has been mandated for NHS implementation. The most recent review was on 1st April 2012 by the Information Standards Board (4th edition of ICD 10), where the mandate continued throughout the NHS.
Use the above facts when faced with scepticism of M.E. and especially if the illness is treated as a behavioural/psychiatric illness.
(Since March 2014, The Information Standards Board has been replaced by the Standardisation Committee for Care Information, SCCI. They have confirmed that the authorisation of ICD 10 in the NHS still stands and there are currently no plans to change this. ICD 10 legislation will be reviewed in a 5th edition sometime between 2016-2019.)
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.
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.
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.
Saying No Can Be Positive Empowers sufferers who wish to refuse psychological therapies.
.Paper: ‘Knowledge in the hope of protecting M.E. sufferers from unnecessary sectioning’
Statement demonstrating that M.E. sufferers DO NOT have a phobia towards exercise, in response to the Jan. 2015 Lancet
Letter giving permission for next-of-kin to read medical notes.
Booklet: No Hydration No Life available on request as a hard copy. Also, available here to freely download. Tips for printing the A5 booklet: print landscape; both sides of paper; PDF may need you to ‘shrink to fit’.
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!
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.