It was attending the CMRC meeting in 2014 that gave me the ammunition to confront Peter White with his own abusive remarks in print. Should I not have gone (with the encouragement of IiME)? I don't think so, to be honest.
But presumably that encouragement was only *because* the CMRC existed at all? Not because Invest in ME felt it was a useful organisation in and of itself... quite clearly they don't think that and never have done so as far as I'm aware? My point is that the CMRC need never have existed had it not been a vehicle largely dreamt up by Holgate, to create big data sets that could weild information in a form suitable for the BPS school and the Establishment to use for their own ends. The Link that Jo posted above makes it absolutely clear that this was the intended purpose... (
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0). So your observation re attendance is moot in a conversation where the thrust is about whether the organisation should exist or not, even if you think you learned something, because its very existence sways the power base in the UK right away from the patient, and individual 'connection's' such as you describe, whilst welcome, do not make up for that huge imbalance.
As I observed elsewhere, I think it's clear that some speakers to the CMRC Conference / members of the CMRC (I'll give Peter Rowe as an example of the former) are decent researchers, very possibly (probably?) surprised to find themselves in the middle of a battleground not of their making because there has been a certain amount of 'creativity' apropos their invitation to the event/ organisation in the first place. Peter Rowe is a useful example because his recent talk made it clear that he had huge issues with Peter White et al and their very strange observations about OI in ME (see 6 minutes:
) .
Either Peter Rowe is unaware of the back story of the CMRC and to whom he was addressing these remarks (in which case he was indeed 'duped'), or he was exceedingly aware of the controversy and was making very pointed barbs at Peter White who was presumably in the audience? Now surely for patients (and as a patient I have a prime and unassailable vested interest which trumps, imo, researchers etc when it comes to the desired direction of advocacy) it is better that decent researchers aren't duped into being cogs in a machinery which is part of the problem, not part of the solution, and are gently steered toward truly collaborative exercises elsewhere (where their strengths would be warmly welcomed , I'm sure) that don't require signing up to very odd rules of engagement where FOI requests and Parliamentary Questions are seen as forms of harassment?
It is to be welcomed that researchers such as yourself are brought to the field, but given what you must now know as a result of your engagement with Invest in ME about the appalling way in which people with this disease have been treated, it behoves people with your influence to do right by patients..and those patients who are engaged enough to be cognisant of the political history of this disease, almost to a man (and a few old birds), want to see a terrain in which conflicts of interest do not persist. Surely that is perfectly reasonable? And the CMRC, from its little newborn-baby-cotton-socks to its now slightly gouty falling-apart-at-the-seams presentation at the recent Conference (even Holgate admitted it hadn't done what he wanted it to do) is a tangle of vested interests so tightly knitted into its DNA that, imo, it should be put out of (its) our misery and laid to rest.
), so nothing I say should be construed as legal advice, legally correct, or anything apart from the ravings of a...........