We vote 'no confidence' in MEGA research for M.E.
A UK medical research group called MEGA (M.E./CFS Epidemiology and Genomics Alliance) has set up a petition for public support to help them obtain millions of pounds (estimated minimum £9m) from research funding bodies for a prospective study of a neurological disorder known for research purposes as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
The professional ethics of petitioning the public for support in order to obtain research funds and petitioning support of a vulnerable community of patients/carers is questionable.
The MEGA petition includes words such as 'biological' 'biomedical' 'big data' 'potentially game-changing' - clickbait for patients/carers desperate for definitive diagnostic tests and medical treatments, yet updates show how little thought and planning has been given by the research team to their own proposal. They had not even thought of including the 25% most severely ill patient cohort in their proposed 12,000 participants.
A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.
and in conclusion
Thus in signing this petition we reject calls from the ME/CFS Epidemiology and Genomics Alliance to create any proposal for a ‘big data’ study, or any study of any description, regarding it as inevitably and irrevocably tainted.
No more wasting time, money, lives – not in our name.
There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing'.
NB: I am not connected to this, the first time I was aware of this is shortly before I created this post.