Response to "Why we are supporting the MEGA research project" Action for ME Nov22/2016; #pwme ~550 words.

MEGA: I will not support CFS researchers who refuse to discuss CFS research.

I do not believe science and "patient engagement" are served when patients' questions are blocked.  The continued joint silence over Pace gives me no confidence in the MEGA trial proposals.

People with M.E (pwme) have clamored for pure biological research.  After so many years, MEGA promises much but is tarnished by the involvement of researchers who still believe that treating M.E as "fear avoidance behaviour" is appropriate (PDW, EC, PACE).  One of these only, has left the project.  As amply demonstrated by the fierce opposition within the OMEGA petition, many patients feel this is unacceptable.  Invest in M.E has been the true driver of UK biological research for many years and the CMRC needs to up its game considerably to rival their efforts.

Big science isn't necessarily good science and researchers and charities should not simply chase funding.  Before we drain research budgets we should ensure all involved agree on what makes good scientific methodology.  And to be clear: we do not need new research to make huge progress: We can update NICE guidelines in the light of the intellectual collapse of PACE.

We can say that pwme and researchers should work together, but this relationship is already unbalanced.  12,000 pwme want the Pace trial removed.  No-one at MEGA seems to be listening at all.  If MEGA selects a patient panel from *only those who will not challenge pace* then it cannot ever be said to be fairly representative of M.E "patient values".

The promise of biological research is not enough.  First and foremost, charities, researchers and pwme must demonstrate a commitment to the scientific method.  This issue is not about BPS vs biological research it is about good vs bad science.  People with ME need researchers who are able to make this judgement, researchers who are politically free enough to be able to openly discuss research results, past and future.

A biological whitewash will not clean up pace.  The methodology must be addressed before we can move on.  Simply put: "Those who cannot question the scientific validity of PACE should not determine the direction of future M.E research."

Where there is such polar disagreement over what makes good science and good treatment, the potential for harm is immense.  While Britain remains enthralled to the 'magical medicine' of CBT/GET, severely ill M.E patients must be protected from harmful contact.

Without a foundation of care and of science: you are not doing medicine.  Many are happy to hammer out face-saving measures, but we cannot allow another generation of young people with M.E to pay for the choices made by this generation of doctors.  We cannot carry you forever:  We are in pain.  We need to rest.

I have been ill for 30 years, and I want good quality, open, biomedical research into M.E.  I cannot support MEGA, and by association, Action for M.E; The ME Association; ME Research UK; AYME and the CMRC.  Your proposals turn a blind eye to Pace and all that we can and must learn from it.  This is not how good science starts.  This is not how good science is done.  You do not continue with this research in my name.

@batteredoldbook
12:49 22/11/2016