A PDF and text version of the draft Terms of Reference can be read here
A need of accountability and a firm resolution: update
From: Ian McLachlan
To: Des turner
Cc: ANGELA KENNEDY
Sent: Tuesday, November 11, 2008 7:34 AM
Subject: A need of accountability and a firm resolution: update
Dear Dr Turner,
Given the concerns that were raised within the statement which was read out (and minuted) at the APPG meeting in January this year, supported by 504 signatures, and bearing in mind the APPG’s stated purpose, it is clearly vital and appropriate that every effort is made by APPG Officers to issue a clear statement as to what the Inquiry into NHS service provision will be looking to achieve, and which illness is being inquired into.
The CMO report recommendations may have been accepted by government, but they were never fully accepted by those actually suffering G93.3 Myalgic Encephalomyelitis: neither did they have their expectations raised that major improvements to the provision of primary and secondary healthcare services were going to happen as a result of the report’s publication. Seven years on those that were accused of being sceptical and cynical at the time have clearly been proven to be very astute.
Are those same people, who are again voicing similar concerns, going to continue to be ignored, or will they be allowed to play an active role? It is quite clear that G93.3 needs to be stated in the Terms of Reference for this new Inquiry, as does a need for a biomedical approach. We draw your attention once again to the statement that was read out and now reproduced below:
STATEMENT TO THE APPG:
We are a group of individual people suffering from or closely connected to someone suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome; an illness classified as neurological by the World Health Organisations ICD-10 under code G93.3.
We advise the APPG today of the following:
From the evidence available, it has become apparent that the majority of NHS ‘CFS/ME’ clinics do not adopt a suitably biomedical approach towards M.E. sufferers. Instead, these clinics inappropriately focus on a Cognitive Behavioural Therapy approach, some combined with Graded Exercise Therapy approaches, neither of which has been shown to be effective treatments for M.E. sufferers, and for which there is evidence of potential risk to patients from both treatments.
We advise you that, by not focusing on a biomedical approach to diagnosis and treatment/support, and by focusing on controversial psycho-social treatments, such clinics are causing M.E. sufferers to be put at risk, both physically and psychologically.
We therefore feel the approaches of these clinics are inappropriate for M.E patients.
In addition we remind the APPG of its duty to safeguard the interest of ME sufferers, and ask that it immediately clarifies its ambiguous position of supporting the setting up and continuation of the CFS/ME clinics – especially as that support is also being given on the extremely vague pretext that they are “a base to build from”, despite all evidence to the contrary. We also remind the APPG that their remit is to support, only the WHO code G93.3 of ME/CFS, and therefore believe an unequivocal position of insistence on only a biomedical approach should have been taken from the outset.
We trust that the APPG will now acknowledge that there are, within the ME/CFS community, serious concerns about and objections to the approaches of the majority of the NHS ‘CFS/ME’ clinics, and have this formally entered in the minutes.”
In the circumstances, we must therefore reiterate and emphasise that, if an Inquiry into NHS service provision is to have any relevance, the issues of:
1. The WHO ICD-10 status of G93.3 (neurological) having been assigned to ME/CFS;
2. The need for a bio-medical approach to this illness;
3. The objections made by people in the ME/CFS community to the current service provision, and exactly why those objections are being made;
must form part of the Terms of Reference.
Cc. Co-Cure list