United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Esther12 said:
They don't want you to post things that will have a harmful impact on someone's reputation? What a weird idea.
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It is alright for Prof Crawley to libel and to slander specific individuals (eg David Tuller), organisations and charities (eg the MEA) and whole groups of people (ie people with ME), to lie and misrepresent ethical and methodological flaws in her research, to perpetrate medical abuse on children and their families and to fail to address valid scientific criticism of her profoundly flawed research. However heaven help us if anyone posts things 'that will have a harmful impact on someone's reputation".
 
Hmm

Well these people have AFAIC piddled about with groups and conferences since 2008 and not achieved much so don't expect applause for stepping up a gear on the biomedical research side. That's a decade of my life lost, it's not ok.

They mention the dementia uk platform, I looked that up in the past and if I remember rightly it's backed by millions of pounds MRC investment which is enabling them to make good progress, We haven't because the MRC refused to ring fence money for biological research or set us up a post mortem facility or anything really.

Holgates been involved in this field , as a researcher initially, since 2002 or earlier - it's now really the time to "get action" ? Wow, what clicked in his brain, did he read a severe ME sufferer horror story?

I hope the getting views on priorities isn't going to take years as it has done in the past

Is the report thing a good thing? Necessary ?cmrc commissioned the funding report last year, isn't there already evidence for funders and policy makers of gaps and needs?

On the good, the witch from the west departs. she wasn't wanted there. Chris pointing looks infinitely better, good in fact yay. Dr Shepherd now thinks MRC should be asked for money again (too late, again , could have been done way before ) so maybe finally this is a proper effort to actually bring about a serious UK CFS research endeavor , but any fusion with BACME would suggest not.
Lives have been wasted and lost with inadequate response and resources for this illness from a rich, developed country. I'm glad action from other countries might be making uk feel they need to at least look more serious but getting money in from funders talks.
 
https://www.dementiasplatform.uk/about/governance
£53m from MRC since 2014

Dementias Platform UK is a public-private partnership funded by the Medical Research Council. We are proud to work across traditional boundaries, bringing researchers from universities and industry together in the fight to develop effective treatments for dementia fast.

On the other hand pwME/CFS have been told there's no money so the collaborative was not fuelled.
 
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Has Bristol mentioned anything about whatever "new role" she purportedly has? Bristol knows she has made false accusations of libel and has lied publicly on video about a cease and desist letter. I would not be surprised if they're not too happy with her right now. She is bringing unwanted negative publicity to the university. Her victim performance art seems to be losing its effectiveness.
 
Glad EC is stepping down, but presume Fitnet still ongoing and of course she heads CFS Bath clinic. Like Chris Ponting who seems to grasp ME patients have been shafted.

As others have commented the new member, Dr Neil Harrison, concerns me. He is one of the investigators of that ongoing MRC funded study that is looking at CFS as a functional neurological disorder (alternative term for MUS). It is the study the Department of Health spokesperson referred to in the Pace debate at the UK parliament the other week. FND seems like the BPS model repackaged to me. Another person named on that study is Mark Edwards who I think is already a CMRC member.

Here is a link again to the FND study. http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1
 
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Sasha said:
CMRC update: new purpose, objectives and values
March 06, 2018
..
A number of people affected by M.E., originally members of the ME/CFS Epidemiology and Genomics Alliance, have agreed to form a CMRC Patient Reference Group, as full members of the CMRC Executive Board. With their support, the CMRC is seeking to:

  • build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK, and use this to seek greater investment from policy and decision-makers
“We have laid some important foundations” says Prof Stephen Holgate, Chair. “But this is not enough. We need action from the highest level and the CMRC is committed to working with others to drive this. Most importantly, we need to see results now, not in another five years. I look forward to updating members at our 2018 conference in Bristol on Wednesday 19 and Thursday 20 September.”​
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So is Prof Stephen Holgate suggesting that they will first need to 'reinvent' the wheel, and create another so called "high-level" report, and if so, how long would that take, and how would that tie in with his insistence that "we need to see results now, .."? Likewise, is this not something that NICE should be doing as part of their review, regards the IOM report?

My inner cynic suggests that 2020, if instigated by the CMRC at the earliest to coincide with the proposed date for NICE update of guidance, and who knows at this point if NICE will even consider the IOM report as part of this process?
Sasha said:
Prof Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Prof Crawley. New members Joanna Elson (Newcastle University), Colin Smith (Brighton University), Neil Harrison (Sussex University) and Patrick Chinnery (Oxford University) have joined the Board.​
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As noted by others, other than Dr Joanna Elson (link here and here) - a replacement for Prof Julia Newton? - and Patrick Chinnery, they were MEGA team members. Links indicate that she has worked with both Prof Julia Newton and Prof Patrick Chinnery previously.

Jonathan Edwards said:
Chris Ponting is good value .. He might start by bringing in the people who have actually been doing some science who have so far been excluded.
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Jonathan Edwards said:
The people who need to be brought in, having previously been told to get stuffed, are the Biobank and CureME at LSHTM. They have by far the best people in the field in the UK. Eleanor Riley has moved but there are other good people for the team to mix with there and they know exactly what they are doing. The biggest mistake from CMRC was to try to duplicate what the Biobank had already achieved.
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Would be nice to think so, but has any approach been made to these "excluded" researchers already working in the field?

Sasha said:
There were some good people on that, IIRC, who were critical of the bad things in MEGA. This whole thing makes me wonder if their arrival on the scene and what they said helped change things.

If so, hats off to them! :trophy@
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If memory serves, and it often doesn't .. is this a reference regards the three? PAG members who resigned?

dave30th said:
Has Bristol mentioned anything about whatever "new role" she purportedly has? Bristol knows she has made false accusations of libel and has lied publicly on video about a cease and desist letter. I would not be surprised if they're not too happy with her right now. She is bringing unwanted negative publicity to the university. Her victim performance art seems to be losing its effectiveness.
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I have no idea of her "new role", but would not be surprised to see yet another promotion for her.

Likewise, though she may no longer be on the CMRC board, she may well remain involved in this relaunch of the MEGA project; either through receipt of further funding from the MRC? 'signing off' on agreed research applications, and/or in some form of collaborative/lobbying role such as that enjoyed by Prof Simon Wessley.

In summary, from this PwME (n=1), if the CMRC want to regain my trust, Prof Stephen Holgate could always say to NICE you've got it wrong, that "enough is enough", and suppport the removal of CBT and GET from current NICE guidelines "now". Not that he will, if the minutes alluded to above are anything to go by, given their continued need to involve BACME - see the MEGA Q&A page, point 6 - who are delivering these so-called treatments. MEGA was bad then, and there is nothing as yet to indicate any meaningful change of mind on the part of the CMRC in my view .. this announcement is all about applying for funding to the MRC to enable the 'relaunch' of original MEGA project I suspect?

All said, would really appreciate being wrong in my initial assessment of this announcement, and wait on the details. Until then, the announcement is lip service to our needs for meaningful research.

Wishing everyone improved health and every happiness. John :)
 
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