I am the Chair of a local support group representing PWME in Sheffield and the surrounding areas. At the recent Board Meeting of the Trustees of the Sheffield ME and Fibromyalgia Group we discussed the MEGA project in depth and took a decision on where we stand.  We wish to state that we categorically do not support this project.  The rationale is simple:    we are committed to supporting, promoting biomedical research into the neuro-endocrine immune system illness.  We have no confidence in individuals behind the trial that have had connections to the flawed PACE trial and believe that funding could and probably will be directed away from pure bio-medical research rather than psycho-social research.  We believe that the professional ethics of petitioning the public for support and in particular the vulnerable community of patients and carers is questionable.  We believe that any research should represent all PWME and not exclude the most severely affected which the MEGA trial have not even considered.  The wording of the petition includes words such as ‘biological’, biomedical’ big data’ ‘potentially game changing’  all emotive terminology that could mislead patents and carers desperate for definitive diagnostic tests and medical treatments but their updates show just how little thought and planning has been given by the team to their own proposal.  

We believe that PWME, their families and friends should NOT support the MEGA petition but instead support the OMEGA (Opposing MEGA Petition) to make sure that any funding goes specifically to bio medical research without the involvement of  key members and advisors of MEGA who 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’.  

We believe we have a duty of care to our members and people with ME in general, their families and their carers to oppose the MEGA trial, it is an opportunity for the larger ME community to stand together and raise their voice to make sure it is heard once and for all that we need bio-medical research and will not be hoodwinked by the BPS movement any longer.

Sharon Needham, Sheffield, ENG, United Kingdom
6 years ago
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Opposing MEGA

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'.   The BPS illness model of ME/CFS assumes that biological abnormalities and physical symptoms are caused or maintained by psychological or social problems and may be treated by changing the patient's thoughts and behaviours. Decades of research shows that no matter how much 'bio' is found in ME/CFS (plenty has been found) it is interpreted by BPS proponents as due to psychosocial causes and amenable to behavioural therapies rather than signs of disease suffered through no fault of the patient or carer.  The BPS researchers and representatives involved in MEGA have already wasted millions of pounds of research funds in attempts to validate their model in ME/CFS by providing policy-based evidence for the psychosocial treatments recommended by the UK National Institute of Health and Care Excellence (NICE) prolonging suffering and causing immeasurable harm to patients and families. There is no further room for The Wessely School, BPS model, or those advised by The Wessely School, in any context associated with the disease Myalgic Encephalomyelitis.  Following the Tribunal Decision published August 2016 upholding the decision by the Information Commissioner in favour of Matthees and providing for the release of raw data from the PACE Trial, which has subsequently proved that Trial to be a sham, it would be unreasonable to trust the very same people to have the best interests of patients at heart. 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'. A site has been set up for further information -https://opposingmega.wordpress.com/ICO Tribunal Decision published August 2016 -http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDFPlease also updates below. Thanks to all for your support.