Eileen Marshall Margaret Williams
20th January 2006
The recently-released Minutes of the UK All Party Parliamentary Group on ME of the meeting held on 16th November 2005 contain a record of the presentation made at that meeting by Professor Tony Pinching, Associate Dean for Cornwall at the Peninsula Medical School and Chair of the NHS CFS/ME Service Investment Steering Group. It is this Steering Group that defined the criteria for the new “CFS” Centres in the UK; it also oversaw the bidding for and the allocation of the £8.5 million of Government funding. Thus, as Chair of the CFS/ME Service Investment Steering Group, a heavy weight of accountability rests on Pinching’s shoulders.
The title of his presentation was “NHS Service Implementation Programme for M.E. – Progress made so far”.
In his presentation, Professor Pinching is recorded as having said:
“Services will implement the NICE guidelines after these are announced in early 2007”.
This will inevitably be so, and it is therefore imperative that the NICE Guidelines reflect the entire spectrum of available evidence about the best management of ME/CFS. However there is deep evidence-based concern that the NICE Guidelines will be biased in favour of the psychosocial model of the disorder. The UK ME community is urged to place this concern before their Members of Parliament, with the request that MPs bring the matter before the forthcoming Gibson Parliamentary Inquiry on ME.
The reason for this concern is that those advising NICE seem to have lost their independence and intellectual integrity, a situation that, unless effectively challenged, will inevitably have an adverse impact upon those with ME/CFS for decades to come.
It is well-known that NICE limits itself to so-called “evidence-based” medicine, a reliance upon Randomised Controlled Trials (RCTs). In the case of ME/CFS in the UK these are limited to trials carried out by psychiatrists of the Wessely School. NICE ignores not only patients’ experience and input, but also the experience and input of non-psychiatrist researchers and clinicians with vast scientific and clinical experience of the biomedical nature of the disorder.
The outcome of the NICE Guidelines is thus a foregone conclusion: its remit seems to have been deliberately designed to exclude the empirical knowledge base.
It has been confirmed by the CRD that the evidence upon which the NICE Guidelines will rely is set out in the Systematic Review carried out in October 2005 by Anne-Marie Bagnall et al. Bagnall, formerly from the Centre for Reviews and Dissemination at York, is now working at the School of Health and Community Care in Leeds.
It has also been confirmed by the CRD that peer-reviewers for the NICE Guidelines will be the same team as last time and will include Professor Simon Wessely, Professor Mike Sharpe, Professor Peter White, Professor Tony Pinching, Professor Allen Hutchinson (who was Chair of the Chief Medical Officer’s Working Group) and Chris Clark, Chief Executive Officer of Action for ME. Chris Clark has aligned himself with the psychiatric lobby. The implacable views of these people are already well-documented, as is their determined rejection of the biomedical evidence. If they retain total control over the outcome of the NICE Guidelines, no progress can be made.
The alleged “evidence-base” for the use of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) -- provided by Bagnall et al specifically to support the forthcoming NICE Guidelines -- has been cogently destroyed by Hooper and Reid in their paper “Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base” that was released on 18th January 2006 (available online at http://meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html ).
Hooper and Reid have produced a thorough and impeccably referenced analysis of Section 3 of the York 2005 Review (“How effective and safe are interventions for the treatment and/or management of CFS/ME in adults and children?”). It not only invalidates the conclusions of this section of the Review but it also exposes the lack of neutrality that underpins those conclusions.
Such is the concern of many in the UK ME community that Bagnall et al may have been subjected to powerful influences in the compilation of their 2005 Systematic Review that there are increasingly insistent calls for Bagnall (as the lead author) to appear before the Gibson Inquiry. There is evidence which suggests the deliberate suppression and manipulation of available data, and there are suspicions that this may amount to scientific misconduct. The Gibson Inquiry would be an appropriate public forum for her to explain the exclusions and conclusions of her Review.
Following the discrediting of the York 2005 Systematic Review by Hooper and Reid, if NICE persists in relying upon it as the basis for the use of CBT and GET in the management of ME/CFS, the already less than glowing reputation of NICE will be brought into permanent disrepute.
Pinching’s role in all this appears to be central, and to be another betrayal of those with ME/CFS. While Deputy Chair of the CMO’s Working Group on CFS/ME, he ignored the significant biomedical evidence and pre-empted the conclusions of the CMO’s Working Group Report by publishing his views advocating CBT for “CFS” (ref: “Chronic Fatigue Syndrome. Anthony J Pinching. Prescribers’ Journal 2000:40:2:99-106). In the same way, Pinching has now pre-empted the NICE Guidelines.
This would seem to indicate that biomedical science has little place in the agenda of Wessely School adherents and their commercial and Government masters.
Pinching is also recorded as having said in his presentation that his CFS/ME Investment Steering Group had demonstrated that the services were “an appropriate, cost-effective and exemplary way of caring for and supporting a needy patient group”, a claim that does not accord with the evidence of patients themselves.
In his presentation, Pinching also said he did not accept that evidence existed to justify treating subgroups of patients differently.
One can but ask yet again why someone in a position of such responsibility as Professor Pinching appears to be intent on wilfully ignoring the large body of international researchers calling for sub-grouping of “CFS” as a matter of urgency. For illustrations, see “Vilified but Vindicated” by Professor Malcolm Hooper et al, available on line at
To persist in denial of the evidence is a dereliction of duty by all concerned.