UK CMRC Conference 2018 - David Tuller

Which has more or less been the AfME approach up until very recently.

I thought it was quite telling that no one had any questions for David T.
(apart from some later bizarre question asking him if he knew a patient who had gone thro' the courts in the US to get disability , can't remember the name).

eta: re Holgate and the CMRC

 

For me Holgate had his chance. He didn’t have to spend five years with Esther Crawley on board, he didn’t have to consult Wessely at the start, he didn’t have to have SMC involved when their position was known. He should have been asking for money for MRC from way back. I actually think the various Expert groups the MRC has been involved with have been a substitute for funding. So when the Gibson inquiry said we should be getting funds in 2006


http://www.investinme.org/Documents/PDFdocuments/Gibson Inquiry MEInquiry Report.pdf
7.3 The Immediate Future
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve. It is an illness whose time has certainly come.


The ME expert group was formed 2098 , the charity were “ brought” with promises of collaboration and ultimately funding, but that was only transient then the next years we were palmed off with the CMRC, did people really think the field could start to flourish and generate interest without funding to incentivize it?

Like jonathon Edwards I still don’t really get the CMRC and it’s predecessor. Was this Stephen out of a vague interest setting up these out of his own initiative of were the MRC behind it? Why do the charities think he’s so wonderful. Why were the charities supportive of the previous now abandoned way the CMRC was operating. How can the MRC be so present , part funding it etc when a lot of the discussion around ME research is surely we desperately need research funding, isn’t that a massive elephant.

 

Just for background it looks like the ME expert group was an MRC project because it’s referred to as such here

https://www.meassociation.org.uk/20...research-workshop-held-on-1920-november-2009/

As you can see they were having a conference type thing even then. And Stephen Holgate was the chair of this at MRC appointement I’m guessing . I think that the MRC disbanded the group when they gave the 2011 funds , i don’t know why, and then Stephen Holgate either independently proposed a sort of contuation under a different name thing , or the MRC continued it. But whatever, it looks like the MRC stepped back but were still involved. As the ME expert group was an MRC initiative and the CMRC a pretty direct follow up it makes more sense why it was all so establishment, Esther Crawley was a big figure of various key CFS groups pre 2010 including BACME I think and another establishment CFS one and was given a top post, Peter white was part of the expert group, and was then part of the CMRC.

Holgate I’m sure over this time had as much a bps Approach as someone like arthritis UK seem to and the MRC did, if he’s slowly been made to evolve well that’s jolly good but it doesn’t make him an asset afaic. Of note is that Holgate was talking about big data studies right back then too. So the idea CMRC represented something particularly new I just don’t accept, it might have had a slightly different format based supposedly on his asthma initiative but to have expected equal interest and field growth seems naive beyond belief. .




https://phoenixrising.me/archives/16786
Looking back at The CMRC start there was lots of controversy about the broad tent which was spoken of “as how it has to be”. What I don’t understand is if it was independent of the mrc why Did it have to be when the focus should have been biomedical research and if it was all directed by the MRC, why keep their distance.


Just found more in 2008 minutes
https://mrc.ukri.org/documents/pdf/cfsme-expert-group-minutes-1st-meeting/

Well aware of MRCs long CFS History
“Professor Holgate gave the Group an overview of the strategy developed by the previous 2003 MRC CFS/ME Research Advisory Group and outcomes of the 2006 Action for ME/MRC Research Summit. Whilst research had progressed from that time, there still remained problems that made research in this area difficult. These included the lack of well-defined phenotypes and the heterogeneity of the condition.”


The idea they’ve had five years is convenient spin



Also:

5. What are the research opportunities and the way forward?
5.1 The importance of collaboration was highlighted as a key issue in helping research move forward in the field of CFS/ME. It was noted that CFS/ME research was currently quite fragmented and by setting up a collaborative approach would help in the following areas:
• prevention of duplication of effort
• lead to joined up resources and funding
• would bring in existing national resources such as the clinical networks
• would help in looking at the bigger agenda.
5.2 Members discussed the possible ways for increasing research in CFS/ME. Members agreed that a workshop that built on the previous research summit was one way forward. However, in order to engage the interest of researchers from related fields, the workshop should also address the related areas outside of the direct CFS/ME area, such as fatigue, pain, malaise and cognitive impairment, which are relevant to aspects of the condition. This would have several benefits to CFS/ME research. Firstly, leading scientific experts who may have previously considered research in CFS/ME outside of their field may become engaged and bring different perspectives and research ideas that would be of benefit to CFS/ME. Secondly, this could also stimulate an increase in young people beginning to work in the field of CFS/ME. Furthermore, CFS/ME researchers might gain in terms of access to new resources and technologies. Thirdly, a workshop would allow dialogue between researchers and patient groups to reassure them that CFS/ME remained a research priority and that high-quality research was feasible.

 

What I don't understand is why Wessley has not been brought in front of the Science and Tech "Research Integrity" enquiry to explain his support of the PACE trial?

When I asked this face to face with my MP, he was very uncomfortable?

I asked something about surely Wessley's judgement has to be in question? especially with his influence with IAPT?
More sqirming of my MP

I have a memory that Ben Goldacre was asked for his view but I never got to find out how he saw the PACE debacle?

Does anybody know the answers?

or could I be pointed in the right direction 'cos I've probably missed something which I feel is important?

 

Was half expecting to see a paintbrush in psych's hand and a pot of paint with 'PACE' on it.

 

Goldacre studied under Wessely - there are a collection of comments from him here: https://forums.phoenixrising.me/ind...-what-they-said-they-would.41627/#post-672243

I can't update them anymore.

 

I believe your posts are your copyright, in which case you could copy it across to here if you wanted. Would have to double check the PR T&Cs.

ETA:

[ My underlining]

Added the above from PR T&Cs @Esther12.

 

I didnt think the question bizarre as assumed he was just being helpful to make David aware of a useful court case in case he didnt know about it.

 

I found this weird too. Getting David to one of these events is a real coup.

I remember him taking lots of questions at the Invest In ME conference dinner in 2017.