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UK Research Collaborative Conference in Newcastle: 13th - 14th October

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Sasha, did you know Dr Holgate asked Mr Wessely who he thought should be part of the 'research' collaborative?
Source is FOIA Request. FOI request to the Medical Research Council (MRC). Some charity found out.

Anyway, due to this odd choice, I wouldn't hold out much hope there's going to be much talk on real biomedical ME neuroinflammatory research like in Japan and USA, moreover just the same old thing.

If I'm correct, Dr Holgate's background is a chest physican. Perhaps the MRC can fund a study, in which rates of Fibrosis (potentially fatal lung damage) can be looked at in terms of prevalence in long term severe ME patients, using the appropriate tests.

Hopefully that is the kind of study the MRC can fund oneday.
 

Sean

Senior Member
Messages
7,378
Sasha, did you know Dr Holgate asked Mr Wessely who he thought should be part of the 'research' collaborative?
I'd be careful about reading too much into that. There are a number of possible reasons why Holgate might have done it. Not all of them good for the Wessely school. For example, it might have been a way for Holgate to find out who the main players in the psych school are, and hence be able to pick one or two of the less doctrinaire of them, so that the psychs can't complain about being left out, but their influence (at least from the more hardcore among them) is vastly reduced.

Awful lot of face-saving politics goes on at that level during power transitions. Sad, and sickening at times, but a fact of life that can't be avoided, it can only be managed, for better or worse.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha, did you know Dr Holgate asked Mr Wessely who he thought should be part of the 'research' collaborative?
Source is FOIA Request. FOI request to the Medical Research Council (MRC). Some charity found out.

Anyway, due to this odd choice, I wouldn't hold out much hope there's going to be much talk on real biomedical ME neuroinflammatory research like in Japan and USA, moreover just the same old thing.

If I'm correct, Dr Holgate's background is a chest physican. Perhaps the MRC can fund a study, in which rates of Fibrosis (potentially fatal lung damage) can be looked at in terms of prevalence in long term severe ME patients, using the appropriate tests.

Hopefully that is the kind of study the MRC can fund oneday.

@Research 1st, if you want to be sure of getting someone's attention it's best to put the '@' in front of their name or they might not see it - people don't always keep reading threads they've posted on (using the '@' is called 'tagging' and it makes a little red flag pop up next to your name so you can notice it :)).

Yes, I was aware of the Wessley/Holgate thing, which came up last year in the course of a long discussion about the CMRC before last year's conference (which was the first).

People were understandably discussing their concerns about the balance of power between the BPS proponents and the biomedical scientists on the panel. Like @Sean, I don't see anything sinister in this. Much as we might dislike the BPS approach and think poorly of the shoddy thinking of its proponents in relation to ME/CFS, it's not possible to set up a proper scientific organisation at a national level and rule a bunch of scientists out and still expect to be taken seriously: and contacting leading figures of any particular camp to get recommendations for who should be in would be a normal step.

As it turned out, the balance at last year's CMRC conference was overwhelmingly biomedical, according to @Jonathan Edwards, who attended (his interesting comments are here, on a thread that discussed the science at the conference).

Dr Holgate has worked hard to get the CMRC going in order to increase ME/CFS research funding from the MRC (something that he saw succeed spectacularly in his own field).

According to the MEA there'll be an "important announcement" of an MRC grant this evening.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I still feel uncomfortable with some of the names involved in the collaborative. I admire the pragmatism though and hope it proves worth it. The writing's on the wall for the BPS stuff so time should improve the likelihood of the collaborative growing and delivering benefits.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Surprised they're still broadcasting - I didn't realise they'd broadcast Dr Montoya's talk (the video is frozen, BTW, and there's currently a 1 minute's silence in memory of Dr Lerner).
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I like what I'm hearing so far - Both Prof Holgate and Dr Montoya sticking the boot into psychological explanations, both waving the IoM report (metaphorically), good plan from Prof H for national study... can't keep up...
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
People can comment live (if they sign up, I think) - you can see live comments to the right of the screen.
 

K22

Messages
92
I don't think it was at all necessary for Ho,gate to consult Wessely over name or possible researchers to bring on board as he did. Wessely was supposed to have retired from the field as he always asserts and there was gross lack of transparency to a patient group being presented one thing whilst the main uk BPS, no such thing as ME, let's look at psychology not viruses proponent was being still involved behind the scenes.

With regards to the conference, as countess of mar said, the purpose of the U.K. CMRC was to increase research interest and pump up funding so it is results on those fronts (especially equal funding) , rather than the talking side of things that I'm most interested in,being a bedbound patients I just want research to get me better.

So far Jose Montoya is speaking brilliantly in full on serious "USA speak" - lots of words we don't hear so much in uk CFS/me discourse like me/CFS, disease, sick , infection, anti-virals whereas we usually hear CFS/me, condition, fatigue, muscles & exercise - so I am thrilled he was there.
 

Sean

Senior Member
Messages
7,378
Thanks, eafw. :hug:

I just want research to get me better.
We all do. But politics is part of the hard reality we patients, and those clinicians and researchers on our side, have to deal with and negotiate.

Montoya's talk is great. :thumbsup:
 

Sean

Senior Member
Messages
7,378
Are recordings of these talks going to be available online later? I missed Holgate's opening talk, and would really like to hear it.
 

Sean

Senior Member
Messages
7,378
Aaaaaaannndd the picture is back! A little jerky, but good enough to see static slides.