Communication doesn’t seem to be working very well at the moment does it? Perhaps we could have a Patient Representative we trust to help us communicate our concerns?
Oh, sorry, we’ve got one, Sonya Chowdhury, head of the charity PWME trust the least - AFME (no offence to AYME in case they were going for that coveted title), because AFME has repeatedly shown itself to be a front for the BPS brigade.
The only communication at the moment is having to go “around” Chowdhury, all she’s done so far is failed to prevent a gremlin putting their foot on the cable during Dr Zaher Nahle’s “No Spin” presentation, which I would have loved to watch.
If Chowdhury is the best MEGA can offer, then PWME are basically unrepresented. A prerequisite for the position of Patient Representative should be that it’s someone the patients trust. Chowdhury isn’t it.
Can we have a bit less of the “scaring off researchers” and “people who simply want to strangle this proposal” please? Anything that even hints at the vexatious patient narrative should be scrutinized closely, whichever quarter it comes from.
ME research in the UK has a history, and there’s no point pretending it doesn’t. That history is 30 years of neglect and abuse, so PWME are likely to be pretty vigilant about any new research that affects them, and want to subject the researchers and projects to considerable scrutiny. We are generally pretty appreciative of our heroes – Ron Davis, the Norwegians, Tuller and others. If any researchers have a problem with addressing the concerns of PWME, they’ll just have to grow some and get over it instead of calling the patients scary or baby-stranglers.
Of course we can’t expect to vote on personnel or decide on details of the research, but when we are presented with a team including the very people who have historically been responsible for our continued suffering and have shown no recent signs of changing their colours, in fact quite the reverse, no-one can be surprised at the patient reaction, especially when “patient involvement” seems to be just an empty soundbite, that so far has only consisted of a “please sign this so we can prove how great you all think we are”.
Whilst a desire to simply strangle might be enough to motivate some people (hopefully not anyone I know) there also seem to be quite a few valid reasons for preferring this research not to go ahead as it currently stands, as detailed by posters in this thread, including structure, personnel, how much can be achieved with X amount of money for 12,000 participants, how many years will it swallow up all research money for …
However, when it comes to the aims and objectives of the research, there are some serious misunderstandings and inaccuracies being circulated on the internet as to how this 'big data' is going to be collected, analysed and used. This is NOT a treatment trial in any sense of the word and it has nothing to do with PACE, CBT or GET.
Such serious misunderstandings are not helped by the second paragraph of the petition:
We are trying to understand more about the biology of the chronic neurological condition, Myalgic Encephalomyelitis (M.E., often diagnosed within the NHS as chronic fatigue syndrome or M.E./CFS). If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.
So far, in trying to get a response to their legitimate concerns, PWME seem to have been banging their heads against a wall. The main concerns at the moment are about the personnel, and they are not being answered. To go on to discussions of the wonderful technology, diagnostic criteria of groups to be studied etc is putting the cart before the horse – what are White and Crawley doing there?
Did the Wellcome Trust insist that their BPS mates in the SMC who share the same roof are represented on the team as a condition for considering the grant? Pardon the speculation, but if there’s no transparency or communication then that’s what happens.
And if the good scientists on the team are so keen to play with their new toys that they are prepared to overlook the history of abuse that some of their new colleagues are responsible for and the dangers of having such people involved, then patients aren't, sorry.
