A formal complaint has been lodged by Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State with responsibility for the Medical Research Council (Science and Innovation) about the “PACE” Clinical Trial of behavioural modification interventions for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).

PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.

The MRC’s PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.

Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by 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.

In 1992, the Wessely School gave directions that in cases of ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described by Professor Simon Wessely as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”.

The complaint is supported by a 442 page Report which addresses areas of major concern about the PACE Trial.

These include apparent coercion and exploitation of patients, flawed methodology, apparent lack of scientific rigour, apparent failure to adhere to the Declaration of Helsinki, the unusual personal financial interest of the Chief Investigator, the vested financial interests of the Principal Investigators and others involved with the trial and the underlying non-clinical purpose of the trial.

The psychiatrists’ unproven beliefs and assumptions are presented as fact and trial therapists have been trained to provide participants with misinformation; therapists have also been trained to advise participants to ignore symptoms, a situation that may in some cases result in death.

There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.

People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders.  As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.

The Report can be accessed - click here

CONTACT: Professor Malcolm Hooper   0191 – 528 - 5536