PACE: “surprising and disappointing”
18 February 2011
Action for M.E.:
"Currently, there are no effective treatments for M.E. This research shows that none of the therapies currently available results in a complete recovery. The need for more biomedical research is more paramount than ever before."
The PACE trial was limited to patients who were well enough to travel to hospital for therapy and those who had fatigue as a primary symptom.
Sir Peter continues, "We are still in the dark about therapies for severely affected patients and for those who experience, for example, pain rather than fatigue as their primary symptom.
"It is now more abundantly clear than ever that the UK needs to make a completely new start on scientific research in this neglected area. Resources must in future be concentrated on the biology of the condition in order to discover the underlying disease mechanisms. Read more>>
2 comments:
AfME have collaborated with and supported the PACE trial throughout - Peter Spencer was an observer for the trial (how much was he paid?). They should hang their heads in shame at the damage they have contributed to.
"Collaboration with the PACE study
PACE RESEARCH STUDY – a statement July 2004
Various comments have been made by individuals and other organisations about our support for the PACE study. We are pleased to explain our position.
Action for M.E. has found from repeated surveys of its membership that Pacing has been the approach that people have found of most benefit in managing the illness and helping toward recovery.
The Chief Medical Officer’s Working Group listened to the Action for M.E. surveys and the contributions of the Group’s Members and for the first time acknowledged the usefulness of Pacing – along with other rehabilitation approaches used in the NHS.
But the Group acknowledged there was much that was still unknown about the effectiveness of all the approaches and recommended a research trial comparing them.
"Because of the shortage of good research evidence of the effectiveness of pacing, there is an urgent need for randomised controlled trials of pacing therapy, particularly in early illness (for example, in comparison with rehabilitation therapies such as cognitive behavioural therapy and/or graded exercise, and other forms of support such as counselling)."
The Report including this key finding was accepted by all the members of the M.E. Alliance
Subsequently Action for M.E. undertook further surveys that showed members do want research into and more information on Pacing.
Accordingly, and having checked that a study would not divert funds from our members overall priorities to find the cause and a cure for M.E., we agreed to support a trial comparing Pacing with other approaches.
It is not true – and never has been – that the funding of PACE has diverted money away from other M.E. research.
Chris Clark"
If only the journalists, who are jumping all over the PACE piece and proliferating more crap columns about fairytale cures, would listen to this call for funding of real science, and write about that angle instead.
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