The Troubling Case of the PACE Chronic Fatigue Syndrome ( CFS) Study.
Julie Rehmeyer, a patient suffering from Chronic Fatigue Syndromes ( CFS ) had filled a case against the institution treating her.
But it wasn’t the usual litigant Patient taking her doctor to the court of law. She has questioned the recommendations of a huge clinical trial by one of the world’s leading medical university and published in an equally prestigious international medical journal.
The case:
A patient of CFS has questioned the methodology of the PACE trial conducted in Queen Mary University, London ( QMUL) and the journal was ‘The Lancet, 2011“.
[ PACE was a study of over 600 CFS/ME patients randomized to three rehabilitative modalities of treatments vs control: CBT, GET, APT and a control condition, standard medical care (SMC). ]
The PACE trial used the Oxford criteria for diagnosis of CFS and had given a positive recommendation for a rehabilitative therapy which has aroused a lot of discontent among the beneficiaries.
Patients said they are not getting any cure where as the study defined criteria that pronounced recovery. As if the study said, “we are the doctors. When we pronounce you have been cured, you cannot say no.”
After all it’s a huge, Disability Insurance Companies (DWB) funded study from the famous Queen Mary university, London over six years and at a cost of £5 million. How can it be wrong ? And you medically illiterate patients could be right ?
So Julie used the RTI to access the study findings that could formally declare her cured when she herself is not convinced.
However the University took a belligerent stand. It’s Principal, Steven Thornton remarked, “If my team’s research on CFS is rejected, the patients will suffer.”
So instead of reviewing the therapy model, QMUL went to the court and got top legal hire to fight the case.
They argued that the data even though anonymised, if made public, will breach the patient secrecy and medical ethics. It can be misused by psychopath and blackmailers.
The judges didn’t agree.
They classically remarked, “The irony is that although the University is ready to fight a case for 5 long years and spend £204,787 on outside legal advice. Unfortunately it didn’t even once think of reviewing the study. ”
UQML lost the case and have to make the study public. Experts from US and Australia soon found gaping holes in the study. The biggest hole was that halfway through the trial, the researchers have revised the ‘criteria for recovery’ so loose that any patient could be classed as recovered even if they reported worse results.
It seems Disability Insurance Companies ( DWB ) that funded the study, intentionally tweaked the recovery criterias loose, so that more patients can be declared cured. The insurance pay off would decrease.
… … …
Moral of the story:
The Medical community in this case has let itself disgraced by associating with Insurance people and the pharmaceuticals.
Dr Ramakanta's Ideas 