HOPE 4 ME & Fibro Northern Ireland fought the PACE trial in a recent event in Belfast, saying that biomedical studies – not biopsychosocial – should be the leading principle in research towards recovery.
ME, a neurological disorder, causes immense suffering among patients. In the road for recovery, only two forms of therapy are recommended by NICE, both of which are based on research conducted in the PACE trial.
The first suggestion, Graded Exercise Therapy (GET), advocates gradually increasing exercise with assumption that this will lead to recovering. Unfortunately, this has been received by ME sufferers as an insult assuming that they are simply unfit.
The other therapy is Cognitive Behaviour Therapy (CBT) which is often used to re-frame thoughts. Unfortunately, ME patients have found this method to persuade them to ignore their symptoms, rather than adjust their lives to living within them.
According to a patient survey conducted by the ME Association, 74% of patients actually said their symptoms worsened after Graded Exercise Therapy.
Now the PACE trial is under significant scientific scrutiny and the authors are refusing to release their supporting data.
Hope 4 ME & Fibro Northern Ireland recently held an event titled The Scandal Of The £5M PACE Trial For ME: What Can Be Done? to expose the poor science behind the PACE trial. Presented by James Coyne, a professor of psychology at the University of Pennsylvania whose main principle of research has been the coping process in cancer patients, the event was followed by a question and answer session.
Sally Burch, a Trustee of Hope 4 ME & Fibro NI and ME patient, said: “There was a good turn out, and a great deal of curiosity about James Coyne himself at first. As he continued to speak there was a growing sense of optimism in the room. I was live tweeting from the event using the tag #PACEni and towards the end I read out a couple of messages from Twitter where patients unable to attend offered their thanks to James Coyne for his involvement. There was a spontaneous round of applause in the room after this.
“I think the ME movement have found a powerful ally. James Coyne recognises that we are a group that has been hugely misrepresented and even vilified. He recognises that we are in a double bind situation and is determined to help change the way ME patients are protrayed. Taking down PACE is part of that.”
Sally went on to explain: “Lives are at stake. The most severely affected are lying in darkened rooms, afraid to go to doctors as only harmful therapies are on offer. The situation for children is the worst, as children are labelled as school refusers and their parents accused of facilitating their absences. Worst cases have Social Services getting involved. This was discussed during the Q&A session and was recognised as a major issue.
“When the PACE trial tumbles, the whole psychiatric premise of ME should also tumble. At the moment research funding is rarely directed to studying the physiology of the illness. Hopefully substantial research funding will be forthcoming on a per-patient level commensurate with other similarly disabling illnesses. Currently funding is almost non-existant for ME.”
In Northern Ireland it’s currently estimated that there are 7,000 ME patients without a specialist clinic or consultant to whom they can be referred. Hope 4 ME & Fibro NI intend to continue their campaign for a consultant physician led clinic based on sound biomedical principles.