UK CMRC Conference 2018 - David Tuller

That might have been what he meant, but it couldn't have had anything to do with what I said. He spoke at the start of the first day and I spoke at the end. My sense was that he wanted to put all that mess behind us and look forward. I do assume some of the people involved understand at this point that to look at the past means they have to account for it and acknowledge some responsibility for how things have played out to date. And no one wants to take responsibility because the only possible conclusions are that they've supported and enabled and been bamboozled by the eminent scholars who have engaged in anti-scientific behavior and research misconduct. That would include the former vice-chair. It must be a very uncomfortable position to be in.

 

From the clip on this page, you speak, then Holgate was asked to finish off the day?

 

Confess I've not listened yet, but that phraseology sounds a bit like someone playing the victim card ... but I may be taking it out of context.

 

precisely!

yes Barry thats what i thought. what seems unclear is whether he is meaning a victim of patients etc, or a victim with them.... either way its spurious

 

. . . and if it's too difficult for him, he's always free to walk away. I'd get up to open the door if I could.

 

Transitions are often tricky.

 

I agree. I'm left wondering if some people think it is a fait accompli that we will get decent sums (say a million or more) for biomedical research each year from the MRC. We may do so, but it doesn't look in any way certain to me.

Based on what he said, it looks like it would be hard for him to accept the MRC/similar funding a lot of nonpharmacological research and seeing that as enough. He basically is on our side now in terms of calling for biomedical research, so think is best seen as an ally. His leaving the field would suit the biopsychosocialists more I think.

 

I worry that some people can think advocacy efforts are further ahead of where they are. IMO we're now winning the public discussions and debates... but a lot of the important discussions go on behind closed doors where we don't even have anyone in the room.

 

Hm, I don't remember him finishing off the day. He definitely started it off. Maybe he said some words at the end and I've wiped it off my memory slate.

 

Of course that's true. That point was an observation and possible explanation, not a justification.

 

This is true, I think. The change is in what people are saying publicly and the obvious inability to advance cogent arguments in support of stupid research. The vacuity of the efforts to defend bullshit has become obvious. But that hasn't yet forced anyone actually engaged in the bad behavior to acknowledge an iota of responsibility for this debacle--researchers, journal editors, MRC, etc.

 

@dave30th

This is the link to you, Holgate does the wrap/sum up immediately after you at 7.15:

https://www.youtube.com/watch?v=cFXIxeg7Fg4

Really interesting stuff. I got the impression that he wasn't expecting to follow you!

 

I feel as if I've been here before. We get a positive step forward, there a lot of hope and then the Psych movement rise up again and engulf us with a tide of BS.

We are in such a vulnerable place until there is a treatment in place that we can all get.

 

Lots of important decisions about research funding, training on ME/CFS, medical student education, etc are being taken behind closed doors by the same group of pro-PACE 'experts' as ever. They've had decades working their way into UK medical institutions, and that we've shown their arguments are weak has not removed them from positions of authority. Also, people like Wessely are very well connected within the medical Establishment. Those personal connections can matter more than the evidence. In a lot of ways, it seems that those in UK medical research are well insulated from external concerns about the quality of the evidence they're using, and so we're going to have to persuade a lot more people within these institutions that we're right before we're going to be able to get real change.

 

I think he may have turned anti-BPS, albeit maybe for reasons of self-preservation. Whatever his reasons, if he sees his best chance of survival now to be to openly supportive of biomedical research, then that might be useful in itself. It could at least be a useful transitional arrangement.

 

My impression is that, when he said he felt like he'd been looking over his shoulder for the last five years, it was a comment about how the 2013 PACE trial results and their controversy had sucked all the oxygen out of the room during that period, forcing them to look backward and making it difficult to progress on any other front. PACE had become an albatross around their necks. In the end, though, it mainly seemed like a way of saying, "Let's get beyond the past," without actually taking a position on it.

I could be wrong, but that's how I interpreted it.

The problem, of course, is the degree to which PACE continues to influence the medical community. Not just because it may actually harm patients, but because it also promotes complacency in a sort of "ME/CFS? Problem solved!" kind of way.