Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) On 16th June 2005, Dr Sarah Perkins, Programme Manager for the MRC Mental Health Board, wrote: “The main entry criteria for the PACE trial are the Oxford criteria. Their use will ensure that the results of the trials will be applicable to the widest range of people who receive a diagnosis of CFS/ME. The exclusion criterion of ‘proven organic brain disease’ will be used to exclude neurological conditions of established anatomical pathology. It will not be used to exclude patients with a diagnosis of ME”. Concern that the MRC classifies “CFS/ME” as a mental disorder Given that the psychiatric lobby demands 100% proof of an organic pathoaetiology for ME/CFS before they will “allow” it to be accepted as a “real” organic disease as distinct from a mental disorder, why does the MRC not require a similar standard of proof from these psychiatrists that ME/CFS is a mental disorder, as they assert? It cannot be emphasised enough that what Wessely School psychiatrists choose to call “CFS/ME” is not Ramsay-defined ME and should not therefore be included as though it were the same disorder. To do so is both a failure of a duty of care towards patients and a corruption of the scientific process. Without doubt, the false beliefs about ME/CFS demonstrated by the MRC are known to be carefullyconstructed “policy-based evidence”, as can be seen from the 32 page Report from a Working Group of the Medical Research Council’s own Neurosciences and Mental Health Board (NMHB) Strategy and Portfolio Overview Group (SPOG) of January 2005. The aim of that Report was to consider the balance of the current MRC research portfolio, and it confirms what the UK ME/CFS community has long recognised – the MRC has considered “CFS/ME” as a mental disorder and will continue to do so: at paragraph 6.2 the Report is unequivocal: “Mental health research in this instance covers CFS/ME”. Other points of note in the SPOG Report include: • the MRC research agenda should be optimally aligned with the injection of Government funding • mental health represents a vast potential market for pharmaceutical companies • under “Mapping the UK research portfolio in mental health”, the Report states: “The analysis will capture all peer-reviewed grants that are live at a given date, which will be classified in terms of a list of mental health conditions based upon ICD-10 classifications” (could this explain the determination of Wessely School psychiatrists formally to re-classify ME/CFS as a “mental” disorder?). In a BBC Radio Five Live broadcast transmitted on 22nd Invest in ME Charity Nr 1114035 February 2005, the Chief Executive of the MRC, Professor Colin Blakemore, exhibited a serious lack of knowledge about ME/CFS, claiming that it does not matter whether “CFS/ME” is an organic or psychological condition. Does he really see no need to search vigorously for the cause(s) of ME/CFS? If not, why does such an approach relate only to ME/CFS and not to all illnesses whose cause is as yet unknown, including cancer, multiple sclerosis and lupus? That the MRC specifically and deliberately classifies “CFS/ME” under “mental health” research is at diametric variance with the Health Minister’s written confirmation given one year prior to the publication of this MRC SPOG Report, which demonstrates the determined defiance of medical science by the psychiatric lobby. Concern about mixing study cohorts The WHO is resolute that taxonomic principles must be observed, but the at the behest of the psychiatric lobby, the MRC is sanctioning the breaching of these taxonomic principles in the “CFS/ME” trials by deliberately mixing study cohorts from the outset. Is this not contrary to the high standards that the MRC claims it requires for all the studies it agrees to fund? Given that the psychiatric lobby demands 100% proof of an organic pathoaetiology for ME/CFS before they will “allow” it to be accepted as a “real” organic disease as distinct from a mental disorder, why does the MRC not require a similar standard of proof from these psychiatrists that ME/CFS is a mental disorder, as they assert? The PACE and FINE trials are flawed from the outset by this deliberate mixing of study cohorts and by excluding those with true ME yet claiming that the results will refer to those with ME. This is important because “the management of the two conditions is different. Patients with ME/CFS should be advised not to increase their activities gradually until they feel 80% of normal, whereas patients with fibromyalgia may benefit from a regime of increasing activity” (D. HoYen; BMJ 1994:309:1515). By lumping together as many states of “chronic fatigue” as possible into what they insist is one “somatoform” syndrome, the psychiatric lobby ignores the known and established differences between fibromyalgia (FM) and ME/CFS, and many in both the FM and ME/CFS communities believe they have a right to know why patients suffering from two different disorders are to be amalgamated in the MRC trials that claim to be studying “CFS”. (continued on page 58) Page 57/72
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