I've had this illness and been around the politics for too long now. It's not hard to smell a rat. Peter White and Esther Crawley are tainted, they simply cannot be trusted. Anyone involved with PACE or GET studies on children is not just questionable on a scientific basis but a moral one. Thousands have reported harm and their response is simply to ignore or gaslight. Whilst patients worked hard to obtain PACE data White worked hard to malign us, obfuscate, twist results and waste money protecting data, this is not the actions of someone dedicated to the scientific process. They offer nothing, instead of research this will be yet another drawn out period of anxiety for patients as we sit and wonder just what they will twist this time. They are peddlers of pseudoscience, an intellectual embarrassment, ideologically and career driven, no serious scientific study should ever wish to involve them. The fact that they are there out of contractual obligation is a horrific kick in the teeth to all of us who worked hard to expose PACE whilst they did nothing but insult us and lie. That this debate even needs to be had is shocking. Who can honestly say they're inclusion is a sound scientific one?

Paul Gadsden, London, 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.