There was a surge of support for our Opposing MEGA petition in response to mainstream media coverage on 1st November of a trial called FITNET (behavioural therapy delivered by internet for children/teens with the neurological disease ME/CFS) run by MEGA researcher and Vice-Chair of the CFS/ME Research Collaborative (CMRC) Professor Esther Crawley.
The news included comments of support of FITNET by MEGA members Professor Stephen Holgate (Chair of the CMRC) and Mary Jane Willows (CEO of AYME, a charity for young people with ME to which Esther Crawley is medical advisor).
Esther Crawley is leading the FITNET trial to “see if online consultations work and are cost-effective for the health service”. Professor Stephen Holgate said of FITNET ‘Patients deserve high quality research like this’ and Mary Jane Willows describes FITNET as “hugely important”.
Each failed to mention that the Dutch study upon which FITNET is based showed null effect of the intervention at long-term follow-up.
Similarly, the PACE trial upon which Esther Crawley’s MAGENTA trial is based, showed null effect at long-term follow-up.
The following quote is a classic example of what our petition explains of how promises of biomedical studies can be misleading in the context of the bio-psycho-social (BPS) model-
“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.” The Times, 2nd November 2016.
On the evening of 2nd November, MEGA closed their petition at 2,546 signatures adding, stating that they would be moving to a website in the next week or two so that they can “better manage content and improve access to information for those that don’t wish to sign up to support this study”.
It has been suggested that MEGA closed their petition because of the high level of critical comments posted to it; the fact that this counter-petition Opposing MEGA (OMEGA) was fast gaining on it with almost the same number of signatures in half the amount of time; and the fact that increasing numbers of people, on reflection, wished to ‘unsign’ their name on the MEGA petition (the number has dropped again since closing).
The decision by MEGA to use a public petition site as a vehicle to garner support has raised a lot more awareness of the insidious bio-psycho-social movement than if they had merely created a website and submitted their grant application/s in the normal way to the ‘mainstream research funders’ to whom their petition was addressed.
MEGA has not gone away, merely moving to a new website, and will apply for funding. They state that they plan to post regular updates and blogs and they say they will ensure there is the facility to ask questions and engage with the MEGA team.
However, many people had ‘unsigned’ the MEGA petition or signed the Opposing MEGA petition precisely because of unsatisfactory responses in correspondence with MEGA, and with important questions unanswered.
MEGA had completely ignored all of the comments regarding the involvement of those people who were architects of PACE and who have caused so much damage to people with ME over the years, who have blocked good quality biological research for decades and who continue to this day to push their harmful pseudoscience with projects like MAGENTA and FITNET.
With such people running MEGA, we have no confidence at all in MEGA or their research proposals. We have seen the damage they have done this week alone (assisted as usual by the Science Media Centre) with the media coverage they received for the FITNET trial which hasn’t even begun but was being lauded as a ‘cure’ for people with ME.
This Opposing MEGA petition remains open so that patients can register their objection to any more involvement of these people in ME research and to reject their calls for more funding. We thank everyone reading our petition, and for the excellent points being made in carefully considered comments, and everyone supporting by blogging or posting on social media. Please join us in signing the petition and share widely – www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
Short link: https://t.co/nx1J9OHPJU
Background Reading –
Review of the first three years of the mental health research function at the Science Media Centre – http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf