The site starts with a cringe-making reference to elephants in bed. MEGA is beginning to seem increasingly like a white elephant.
MEGA is not 'the first of its kind' - because it does not yet exist. We are not even told what it is going to study.
And no mention of the elephant in the room. In all the online discussion I have read here, on the MEGA petition website, the OMEGA website and on social media, one thing that everybody seems to be saying is that patients have no confidence in Professor Crawley. It is not personal, it is about our perception of her professional competence and her apparent lack of understanding of ME/CFS. And yet, MEGA do not even acknowledge this concern, let alone try to justify her continued involvement. There is no mention in her bio that she is behind SMILE, FITNET and MAGENTA, or that she is an enthusiastic supporter of PACE, which she recently described as a "GREAT, great trial." And there is no mention that she is the second highest recipient of UK state funding for ME/CFS research in history – more than all the money the UK government has ever given to biomedical ME/CFS research.
Another point that many people seem to agree on is that priority for research must be given to the most severely affected patients, and that patients who have been unwell for a long time and do not attend NHS clinics (because they are useless) must be included. Again these issues have not been addressed, as new site repeats the assertion that recruitment will come from NHS clinics because that's the cheapest way to get loads of crap data.
I was reading the excellent PR report on George Dave Smith's talk at the CMRC conference (
https://t.co/urMPnSWOAI), which also led me to read Margret Williams's report of his scepticism towards the BPS model at a 2002 conference (
https://t.co/4Tt5vbzJ33). Having read his reported comments I find it astonishing that he is willing to work with people who appear to adopt such an unscientific approach towards research. He does not appear to be somebody who is afraid to speak his mind. It would be very interesting to hear his views on PACE and FITNET.
In the meantime, the real elephant in the MEGA room has just been elected as the next president of the Royal Society of Medicine. It seems there is no shortage of doctors willing to shovel his dung.