Action for M.E. comment on Sunday Telegraph article
July 25, 2021
On Friday 23 July 2021, Action for M.E. was contacted by a journalist from The Sunday Telegraph and asked to provide comment on a complaint reportedly lodged with the Charity Commission (England and Wales) and OSCR (Scottish Charity Regulator) in the last week. The complaint is reported to relate to the Charity’s role in the PACE Trial in 2005. An article was subsequently published in the Sunday Telegraph on 25 July 2021.
The full copy of our comment provided to the newspaper is as follows:
“We have not been notified by the Charities Commission or OSCR of any such complaint and are therefore unaware of its detail, and so cannot comment directly.
"Action for M.E. has campaigned vigorously for many years against the consideration of M.E. as a psychological condition, and we work closely with professionals and policy-makers to improve access to appropriate care and support services. We collaborate with scientists, patients and clinicians to drive biomedical research forward, including funding PhD studentships and, importantly co-leading DecodeME, the world’s largest M.E. DNA study. We have campaigned as a co-founder of the UK ME Research Collaborative for biomedical funding which led to the award of this grant and will continue to campaign for research and treatment for people with this physical, neurological disease.
"With other charities through ForwardME, and individually, we ensured that the voices and experiences of people with M.E. were considered in the NICE Guideline review. We welcomed the removal of CBT and GET from the draft Guideline given the evidence we have provided through our surveys and consultations of the negative impact of those treatments experienced by people with this disease.
"The Charity was involved in the PACE trial as an observer on the Trial Management Group. However, the trial commenced 16 years ago, and we have since made our views of the results of the trial clear. We categorically do not endorse its results, as clearly indicated on our website with our commentary on CBT and GET."
We would also note that in that commentary on CBT and GET (https://www.actionforme.org.uk/research-and-campai...), we clearly lay out Action for M.E.’s role in the PACE trial, including a public apology from the Chief Executive, a number of years ago, for any mistakes made by the charity at that time.
We remain focussed on our aim to provide information, support and advocacy to children and adults while working to secure change for the future.