Launch of the UK Research Collaborative

That's a great piece from ME Research UK, thanks, Sasha. And of course, the UK Respiratory Research Collaborative that enjoyed so much success was set up by Stephen Holgate too.

 

Yes - he's said that that was his motivation for getting an ME one off the ground. A ten-fold increase in funding would be great!

 

UK CFS/M.E. Research Collaborative Executive Board
Teleconference meeting
Summary of discussion
19 July 2013

Minutes of recent executive (teleconference) meeting:
http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-190713.pdf.pdf

 

Two points of interest to me in this:

A bit nervous about this given you have to support the NICE guidelines/similar to be a member of BACME.

There were already clinicians from the NHS on the executive board so unsure if this was necessary.

Anyway, who knows, perhaps I have been looking too much on the negative and it could be beneficial.

I could imagine this conference will have a mix of research incl. some psychobabble. So again have mixed feelings about it.

 

Discussing areas of concern, I think you missed something, Dolphin:

"EC has yet to invite an early career researcher to the Executive Board"

I might have misunderstood this, but if it is EC's responsibility to decide who is invited, I'm not very optimistic about this. I can't imagine her inviting an early-career researcher involved in cutting-edge biomedical research.

We've no idea how this project is going to pan out. It could be disastrous, but it could be transformational. I guess we'll find out in a couple of years or so.

 

I'm increasingly doubtful that any good will come of this. I doubt that much good will come from any CFS 'collaborations' when so many of those who have built their careers on CFS are quacks. So long as they're allowed to go on clinging to authority and money, things will only be able to progress very slowly.

 

Minutes of Forward ME Group, with Stephen Holgate talking about the Research Collaborative.
July 2013
http://www.meassociation.org.uk/?p=16383

Very interesting, and worth reading.

 

Minutes from the CMRC September 24th meeting can be downloaded here.

This includes a report on the conference, as well as plans to evaluate the conference:

I was particularly interested in this

More about this approach in Stephen Holgate's talk to patients (video, plus slide show for a faster version). IT has the potential to move things onto a much bigger scale, and I hope it gets somewhere.

Encouraging, I think.