The letter highlights that the trial was co-designed with a patient group. This is a reference to two of Action for M.E.’s previous Chief Executives (prior to 2011) serving as independent members of the Trial Steering Committee, and sitting on the Trial Management Group.
In a statement last August, our current Chief Executive, Sonya Chowdhury, explained that neither she nor the current Board of Trustees would agree to be involved in this way now, as reflected by our current biomedical research strategy. She said: “I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.”
Given the HRA’s
specific remit, it’s not unexpected that the letter makes no comment on the reliability of the PACE trial’s results, or how these results are interpreted by clinicians working with people with M.E. and/or CFS.
Our view remains that, while potentially moderately helpful for a minority of people with M.E. and/or CFS, these treatments are not effective or safe for everyone. We do not support the current NICE guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E., given the legitimate questions raised about their safety and effectiveness.
