More than 700 people signed the petition to ask the Mason Foundation and the University of New South Wales (UNSW) to cease the trial of graded exercise therapy for chronic fatigue syndrome, in the face of newly-released evidence from the PACE trial (which UNSW relied upon in this trial).
“We are deeply concerned that your trial, UN1111-1180-1073, “investigating the efficacy of online continuing education for health professionals to improve the management of chronic fatigue syndrome (CFS)” is based on poor science and is likely to cause harm to patients. We ask the University of NSW to cease this study immediately and the Mason Foundation to withdraw funding and to cease funding trials using graded exercise therapy for chronic fatigue syndrome.”
The petition and covering letter were sent to the trustees of the Mason Foundation, who funded the trial and the UNSW’s President and Vice-Chancellor, Prof Ian Jacobs. A copy was also sent to the (then) Minister for Health, Susan Ley, and the CEO of Australia’s National Health and Medical Research Council (NHMRC), Prof Anne Kelso, as the NHMRC have also funded graded exercise therapy and cognitive behavioural therapy trials for chronic fatigue syndrome at UNSW.
Since then Australia’s news.com published ‘How Alem Matthee’s letter helped solve Chronic Fatigue Syndrome mystery‘, which explained how the Australian’s freedom of information request revealed that the scientists had changed the thresholds for what counted as recovery, meaning patients who were still sick got counted as recovered.
So far, we have received a response from the Mason Foundation trustees:
Thank you for your email expressing concerns about the Judith Jane Mason and Harold Stannett Williams Memorial Foundation’s (“Mason Foundation”) involvement in medical scientific research.
As we explained to you earlier this year, the grant made to the University of New South Wales for medical research was made from private monies held in the Mason Foundation for which we act as trustee. The trustee distributes funds in accordance with the directions of the benefactor of the charitable trust. In many charitable trusts we are directed to make grants to medical research, and sometimes to specific fields of medical research. There are limitations placed on a trustee in the distribution of funds for charitable purposes that would not apply to an individual or to another type of company. The trustees are not at liberty to impose their personal views or values in respect of distributing money that is held in trust. We must comply with these directions in order to fulfil our legal duty as trustee to the benefactors who left these funds in our care.
As trustee our duty is to act impartially between beneficiaries and in order to do so we utilise and respect the advice of experts in the arena of medical and scientific research. The Mason Foundation makes use of a specially convened panel of scientists from a range of prominent medical institutions to provide advice on the quality and value of the scientific research proposal. We only fund projects that have approval from their University or Institute, and we rely on those organisations to make judgements on and maintain appropriate standards.
Previously, we asked who is on the Mason Foundation’s panel of scientists:
We won’t be disclosing any information with regards to the panel.
This is disappointing and worrying, considering that the main beneficiary of medical research funding in Australia for CFS, Prof Andrew Lloyd considers graded exercise therapy and cognitive behavioural therapy best-practice interventions for CFS and the discredited PACE trial as “having reasonably solid data“.
Thank you so much to everyone who signed the petition and I will keep you updated.