Following the 2011 PACE trial controversy, hostilities between researchers and patients in the UK were so fierce it was unclear how to move forward at all. The situation was desperate, says Stephen Holgate, an immunopharmacologist at Southampton General Hospital. He had never studied CFS-ME before, but believed he could bring some much-needed impartiality to the field.
He knew the community had to start afresh..l
woo let’s erase the fact he was the appointed chair of the mrc ME expert group since 2007. The CMRC was anything but starting afresh.
Part of the problem has been that patients have been seeking a single treatment for a single problem, but, as the recent IOM report points out, these are complicated interactions in different patients,” Holgate says.
silly patients eh, one step Removed from Simon WesselyS patients are fixated on a virus. Actually patients recognise both the complexity and the diversity’s, we are champions remember of complex criteria like ICC which came out before IOM and have various ways of scoring across domains, recognising some might have stronger autonomic dysfunction, others gastric, others immune etc. We are the ones who want a wide Ranging U.K. research program whilst Holgate has focused solely on genetics since 2009. We have been the ones calling for subgrouping of the massive uk CFS umbrella whilst the move of people like wessely, white etc was to lump us all and the MRC funding call studies like the pariante one, used the broad weak oxford criteria
If he means the problem is patients are interested in closely defined ME whilst he’s always been an advocate of broad is best, well thats chiefly imo because his interest is fatigue, whilst we want our specific illness , heterogeneous as it is, studied. I don’t see conflict with what patients want and the IOM criteria which overturned the focus on fatigue.
Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.
“We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”
.
It seems Holgate has no interest in being on good terms with patients doesn’t it. Instead of “impartial” above, read establishment man from outside the field with clear lack of “getting” either the patientS suffering of grievances, spinning the rather weak “success” of his project.
So, the threat of him disbanding the collaborative is supposed to have our side quaking ? Is the whole power of the CMRC that it connects the patient groups with the MRC & NIHR? I’ve never really understood why we had to accept doing things that way, rather than a true collaboration of people truly committed to understanding the biology of M.E , such as the weonderful end MECFS advisory committee who would never have put someone like Esther Crawley as Deputy chair.
I cannot understand why Stephen Holgate gets voted in unanimously as chair and is lauded by the charities, AFME used to even have him on their scientific advisory committee, i don’t know if he’s still there as names aren’t listed. The establishment attitude to /terms of working with us suck .
One nice bit of cheer
One influential charity, Invest in ME, balked at the charter, as well as the stipulation that patients can’t be members. “This [charter] is specifically to block patients who might be critical… critical in the same way I would be,” says Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London, who is advising the charity. “As far as I can see,” he says, “the harassment referred to is legitimate criticism of bad science.”
edit it’s laughable that AFME and mea have power or inclination to whip up a media frenzy against establishment researchers. The unhelful media frenzies have been the orchestrated campaigning including by the SMC against patients.
. Why does the date come up as 15 April 2020
