FORMAL COMPLAINT LODGED AGAINST UK'S PACE TRIAL
From Spring 2010 Forum
The United Kingdom's (UK) Medical Research Council (MRC) received a formal complaint on February 12th regarding their country's PACE clinical trial. PACE stands for Pacing, Activity, and Cognitive behavioral therapy. The graded exercise therapy (GET) and cognitive behavioral therapy (CBT) have been adapted as therapy by the United States' Centers for Disease Control and Protection (CDC) and the CDC's "CFS" website links to the UK government's recommendations that offer this therapy for those with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The complaint was brought by the ME Action's Professor Malcolm Hooper and it is of international significance since the UK has now cojoined ME with the watered down criterias of our own CDC.
The PACE clinical trial is thought to be the very first clinical trial that charities in the UK have tried to stop before recruitment of any patient took place. The trial has been organized by what we have called "psychobabblers" and that Professor Hooper refers to as "psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist — in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it — that "CFS/ME" is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation." As far back as 1992, Professor Simon Wessely advised physicians not to imply that ME or CFS was anything but "a belief". In 1999, that same lead psychobabbler referred to CFIDS/ME patients as "the undeserving sick".
The letter from Professor Hooper was accompanied by a 442 page report which addressed the major criticisms of the PACE trial. The report emphasizes the coercion and the exploitation of patients as well as the personal financial interests of the chief investigator of the trial along with others involved. It explains how replicated science has been ignored and how much of the information was only forthcoming via a Freedom of Information Act. The extensive report gives a wealth of information about unproven facts and assumptions that are misinforming as well as harmful and gravely disturbing. For instance, therapists are advised to "ignore symptoms arising from the interventions, a situation that may in some cases result in death."
The Empirical Definition by our own CDC (BMC Med, 2005, Reeves*, Wagner, Nisenbaum, Jones, Papanicolaou, Unger**, Vernon***), is based on psychological testing that allows more than a third of those with major depressive disorder (MDD) to fit the criteria (J Disabil Pol Studies, 09, Jason et al) as well as up to 25 other diseases that includes the symptom of "medically unexplained fatigue". This allowed the psychobabblers to go forward and explains the title of the 442 page report: "Magical Medicine, how to make a disease disappear." The report states in chilling detail how the UK (and, yes, the United States) is ignoring all the science and has committed themselves to turn ME into a psychosomatic and behavioral illness. This has resulted in the patients having to endure cruel actions including but not limited to parents of young patients being accused of having Munchausens Syndrome by Proxie (MSBP). Patients have been refused payments by their insurance companies and have often endured lengthy and expensive legal bills to have their insurance reinstated. Physicians have abused patients by ignoring all the scientific evidence and grouping together the two very distinct illnesses of "CFS" and "ME". The report asks, "At what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive patients by pretending it does not exist?"
The report concludes, in part, "During the last 15 years, estimated rates of CFS have dramatically increased in both Great Britain and the United States. We suggest that the increase in both the United States and Great Britain are due to a broadening of the case definition to additionally include cases with primary psychiatric conditions…" They quote Prof. Peter White, who has been a part of the CDC's "CFS" committee for years: "…we need to widen the net to capture all those people who become so chronically tired…that they can't live their lives to their full potential (Pop Health Metrics, 2007/5). The entire report can be read at www.meaction.org.uk/magical-medicine.htm.
* Dr. William Reeves is the immediate past head of the CFS division of the CDC.
** Dr. Elizabeth Unger has recently taken over as acting director of the CFS division of the CDC.
*** Dr. Suzanne Vernon is now the scientific director of The CFIDS Assoc. of America
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606