MRC invites proposals CFS and Myalgic Encephalomyelitis Aug 2017

20/08/2017

"The Medical Research Council invites proposals under its cross-board highlight notice in the area of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Proposals should address the mechanisms underlying chronic changes related to CFS and ME in one or more of the theme areas. Applications should seek to improve mechanistic understanding in these areas through the study of cross-disease symptomatology and pathways in the clinic or laboratory."
NO DEADLINE

http://www.rktomdx.co.uk/chronic-fa...cephalomyelitis-cross-board-highlight-notice/

Full details here:
https://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfs-me-highlight-notice/

 

I thought that she had stepped down from the CMRC because she was moving on to other areas?

From what we've seen from the MRC with regards to PACE, it's hard to know whether this money is likely to be a good or bad thing.

 

Bad is my guess. I'd like to be wrong but it was only last year that they were lending their strong support in court to try and keep the PACE data hidden from the public so that the bad research would be covered up, even though their official policies supported the data's release and they had clear obligations to patients and the public. And about 95% of what they have ever funded over the last few decades has been very poor quality psychosomatic research that has achieved nothing of worth so it's hard to imagine they've changed. Even in recent years the only high quality work in the UK has been funded by the MRC's equivalent in the US because the MRC themselves aren't interested! I suppose it's possible that has become a sense of embarrassment for them and that might have stimulated this but I remain skeptical. It's not hard to get this right though, we'll see what they actually do.

 

[My bold]

I find the above tentatively encouraging. Is this their way of trying to (strongly?) discourage the usual suspects, and bring in new blood? Is this a sign that the usual suspects are proving too much of a risk and embarrassment to attract funding? Could this be related to the the failed funding bid by the CMRC?

 

Hmmm, nothing on metabolomics. Way to go, MRC.

 

Maybe not?

 

Bottom one from 2015 has working link that goes to same page

 

Hmmm... she's not on this list, and I'm sure I remember something about her leaving (although my memory can let me down):

http://www.meassociation.org.uk/res...e/cmrc-executive-committee-becoming-a-member/

Just looking at the October 2017 minutes... this looks rather sad:

http://www.meassociation.org.uk/wp-content/uploads/CMRC-Executive-Draft-Minutes-10.10.17.pdf

Aren't the associate members the patients? So only 12 bothered to turn up this year? Holgate and Crawley seem to have destroyed the patient good will that there was for the CMRC.

The entirety of those minutes is just embarrassing. If I was Issar-Brown I'd be desperate to leave that disappointing failure.

 

Also crowdfunded by patients and families, e.g. the Invest in ME Research Centre of Excellence programme underway since 2013 (patient samples taken from 2014) starting with investigation of gut microbiota led by Simon Carding and Tom Wileman and the research on B cells led by Jo Cambridge, all experts in their respective fields and new to ME/CFS research until starting this work. http://www.investinme.org/research-projects.shtml

 

Link to the last accessible archived version, if anybody cares to compare the two - https://web.archive.org/web/2016050...ch/highlight-notices/cfs-me-highlight-notice/

And anybody else notice that the Research and Knowledge Transfer Office page on it uses the tags Health & Education, News and Psychology?

 

I feel hope clashing with scepticism here.

A new highlight notice with a strong focus on biomedical research and mandatory(?) requirement to bring in researchers new to the field is a positive sign.

But it won't be enough, in my view. The previous highlight notice wasn't so different and has had little effect, despite this somewhat optimistic claim:

And this:

The problem is that, while broadly true, it then relies on the current way-too-small research base to solve the problem.

Key question: does the MRC really think this is the answer?
If it does, I think we are in a hole. I hope they don't. And I gather they (and Wellcome) were stirred up by the comprehensive CMRC-commissioned report highlighting how little is spent on mecfs vs other illnesses.

Up til now, they've relied on the CMRC to get things going - it came out of an MRC initiative and the MRC has had a representative on the board. But we've had precious little benefit. Karl Morton has started research, funded by the ME Association, but I'm not aware of any others wh have beyond the few who got funding in 2011 (still waiting for publications).

And the MRC declined to fund the CMRC's big idea, or at least its incarnation as MEGA led by Esther Crawley (please, let's not digress onto that now).

Does it have another plan to make things happen or will it just hope a highlight notice will do the job? Past evidence says that won't work.

 

So I compared the current page to the archived versions available, May 2016, Mar 2016 and Nov 2015 and the only change I could see is the addition of an additional contact....

 

Is this significantly any different to the highlight notice that's been sitying therd for years?
It's a pathetic response to the "funding for ME is dire" report, they the MRC or CMRC with whatever funds, supposedly commissioned. As Simon says of course it isn't enough

The tragedy is that the usual groups (charities) patients would rely on to challenge this type thing don't do anything and just fill their support literature with how great the CMRC are doing. Unless #MEaction will take on the issue of MRC lacklustre effort who will?

 

Even in their initial description they miss out PEM as the defining feature. They have still a fatigue plus maybe some other symptoms focus which is ignoring ME /SEID - still.

 

Merged thread

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a complex and serious debilitating medical condition with a diverse range of symptoms. Profound physical and/or mental fatigue is the most well-known manifestation, while others include pain, disturbed sleep patterns and gastrointestinal problems. Each patient experiences their own personal combination of symptoms but certain ones dominate.

Building our portfolio of CFS/ME research has been a high priority for the MRC for a number of years. This highlight notice builds on a call for proposals in 2011, through which the MRC committed £1.65m to high-quality CFS/ME research.

Some areas considered important and tractable for research by the MRC CFS/ME Expert Group (chaired by Professor Stephen Holgate), and highlighted in that call, were not well covered in the funded applications. These are highlighted below, alongside the other call topics, and now our Research Boards would particularly welcome applications in these areas.

Continues at link: https://mrc.ukri.org/funding/how-we-fund-research/opportunities/cfs-me-highlight-notice/

(dated September according to notification by Dr. Marc-Alexander Fluks)

 

See also:
https://www.s4me.info/posts/99524/