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

It's a pity they didn't stop the bullying of children and their families by doctors and researchers they've supported for years...

 

As if we could harm Crawley's reputation any more than she's done herself?

 

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.

 

I'd have thought a sideways promotion might appeal to Bristol Uni - something to get EC out of the limelight and stop embarrassing them, maybe even try and stop her pulling them down the plughole after her.

 

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.

 

Irony indeed given the quality of hwr recent offerings..

 

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

 

EC is still on the list of confirmed speakers at ESPID 2018
http://espidmeeting.org/2018/scientific-information/confirmed-invited-speakers#.Wp70HujFLWV

But it's not till end of May, so hopefully that can change. She was due to do an early ?breakfast session on ME as a 'Meet the Professor' slot re ME.

 

That may be the publicly sanitised presentation, but I'll bet it's a bit less voluntary than that in practice.

 

Totally agree.

 

CP to be leading - from the minutes that's Carmine Pariante? If so we're out of the frying pan into the fire. Or even worse. Initially I was happy that EC was going, but now I'm even more worried than if she'd stayed.

 

It looks like that's just an error, and it should be CPP.

 

Excuse my ignorance but is this good news or are we not sure yet?

 

IMO: Probably good news, we don't know how much yet, and we also have to deal with the push for MUS/PPS/etc clinics.

 

I think it's probably very good news indeed, but we need to see what happens.

But that push isn't something ever associated with the CMRC, is it?

 

I didn't mean to imply it was (although some people involved with the CMRC may be involved), but this separate push could serve to undermine good changes at the CMRC.

 

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?

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.

Would be nice to think so, but has any approach been made to these "excluded" researchers already working in the field?

If memory serves, and it often doesn't .. is this a reference regards the three? PAG members who resigned?

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