The Charity Commission has confirmed it did not identify any issues of concern regarding the actions of an ME charity, after investigating a complaint that the organisation endorsed a clinical trial described as a “scandal”.
Action for ME supports people living with myalgic encephalomyelitis, also known as chronic fatigue syndrome. The debilitating condition, which can be worsened by physical exertion, affects about 250,000 people in the UK.
A complaint against the charity was made to both the commission and the Office of the Scottish Charity Regulator last month. It concerned a PACE trial (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) that the charity was involved with, which began in 2005 and cost more than £5m to deliver.
The results of the trial were published in the medical journal The Lancet in 2011, and recommended Graded Exercise Therapy as an effective intervention for the treatment of ME. However the results were subsequently discredited.
Part of the complaint against Action for ME, seen by Third Sector, claims the charity “abused its charitable status” through its involvement in the “PACE trial scandal”.
The complaint alleged that the PACE trial was motivated by a desire to downplay and deny the disease by categorising it as psychological.
They also said the trial produced “false evidence for Cognitive Behavioural Therapy and Graded Exercise Therapy”, and that the involvement of Action for ME “caused detriment and harm” to sufferers of ME.
Action for ME denied endorsing the results of the medical trial. The charity said it has campaigned for many years against the consideration of ME as a psychological condition, and works closely with professionals and policy-makers to improve access to appropriate care and support services for people with the disease.
In a statement, the charity said it was involved in the PACE trial as an observer on the Trial Management Group, but that it “categorically does not endorse its results, as clearly indicated on our website with our commentary on CBT and GET”.
Action for ME confirmed the regulator had written to the charity’s trustees outlining its role to ensure that trustees are complying with and discharging their legal duties and responsibilities, and that the charity is managing any incident responsibly.
“The Charity Commission has responded to say that based on the information we have provided, the commission was assured that the trustees are dealing with the matter appropriately and responsibly, therefore no further action will be taken,” said the charity.
A commission spokesperson said: “We recently engaged with the charity Action for ME concerning its past participation in the PACE trial, including specifically whether this activity was within its charitable purposes.
“In response to this, the trustees provided us with comprehensive information about the charity’s involvement in this study and their subsequent handling of this issue.”
The commission concluded: “Based on this information, we did not identify any issues of concern for the commission or that their participation in the trial had been outside of their charitable purpose. Should further concerns come to light we would assess them.”
The Office for the Scottish Charity Regulator confirmed it had received the complaints alongside the commission.