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Crawley: How to deal with anti-science BRS2017

MEMum

Senior Member
Messages
440
From a post by Suzy on another thread
  1. Dx Revision WatchSuzy Chapman, Dx Revision Watch
    ttp://www.meassociation.org.uk/res...e/cmrc-executive-committee-becoming-a-member/

    As at March 2017, members of the executive committee were:

    Chair Professor Stephen Holgate (University of Southampton) and
    Deputy Chair Dr Esther Crawley (University of Bristol).

    Dr Mark Edwards (University College London),
    Dr Zoe Gotts (University of Northumbria),
    Professor Paul Little (University of Southampton),
    Professor Julia Newton (University of Newcastle),
    Professor Carmine Pariante (King’s College London),
    Professor Hugh Perry (Chair of Neurosciences Board, MRC), and
    Professor Chris Ponting (Deputy Director of Functional Genomics Unit, MRC).

    Charity membership is represented by Jan McKendrick (ME Research UK), Sonya Chowdhury (Action for M.E.), Dr Charles Shepherd (ME Association), and Mary Jane Willows (Association Young People with ME).

    Michael Dalrymple from charity, MRC-Technology, has joined the board, along with Mark Jones representing UCB a leading biopharmaceutical.

    Observers are Dr Neha Issar-Brown, (Medical Research Council), Ed Sykes (Science Media Centre), Dr Gabrielle Murphy (BACME) and others who represent Wellcome Trust and the National Institute for Health Research.

    http://dxrevisionwatch.com/
    @dxrevisionwatch
    Dx Revision Watch, Tuesday at 11:50 AMReportBookmark.
 

MEMum

Senior Member
Messages
440
"She is the clinical lead for the specialist child CFS/ME service at the Royal United Hospital in Bath and, sadly, is one of very few scientists in the UK actively trying to find a way to help children affected by CFS/ME."

At least that is something we can all agree on. Although I may have misunderstood.

Can we really agree she is a scientist?
 

Jo Best

Senior Member
Messages
1,032
When one compares the accomplishments of Ron Davis and team, or the outstanding work of Fluge and Mella, with the accomplishments of the CMRC, well, there is no comparison, actually...
Or indeed Invest in ME Research, as they are operating in the same country as the CMRC, and since CMRC launched in 2013, Invest in ME Research has underway a translational biomedical research programme with initial focus on the role of infection and the immune system, so this began with the gut and includes research on B-cells leading to a UK clinical trial of rituximab. Patient samples were taken from 2014 and three papers have been published so far; two reviews and the first paper from the B-cell research. Ron Davis returns to the Invest in ME Research Conference/Colloquium events end May/June for the 2nd year running, joined by regulars Fluge and Mella, among several others.
 

dangermouse

Senior Member
Messages
430
Or indeed Invest in ME Research, as they are operating in the same country as the CMRC, and since CMRC launched in 2013, Invest in ME Research has underway a translational biomedical research programme with initial focus on the role of infection and the immune system, so this began with the gut and includes research on B-cells leading to a UK clinical trial of rituximab. Patient samples were taken from 2014 and three papers have been published so far; two reviews and the first paper from the B-cell research. Ron Davis returns to the Invest in ME Research Conference/Colloquium events end May/June for the 2nd year running, joined by regulars Fluge and Mella, among several others.

In my opinion the research you describe is where significant funding would be better spent. Also any advocates/champions/representation/council may be better off housed/linked with this ilk rather than the CMRC as it is.
 

Yogi

Senior Member
Messages
1,132
Does anyone know if the MEA has commented on this? @charles shepherd was speaking at a reME mber Conference on Sat in Sussex.

Wonder if this came up in questions.

Yes he has given a full and detailed response as would be expected from the Medical advisor to one of the largest ME charities. - He invited David Tuller last Christmas to the cotswolds.

I hope you are fully satisfied with that answer. What more do you expect from our ME charities?
 

Jo Best

Senior Member
Messages
1,032
In my opinion the research you describe is where significant funding would be better spent. Also any advocates/champions/representation/council may be better off housed/linked with this ilk rather than the CMRC as it is.
I think you hit the nail on the head.
If the founding members of the CMRC really wanted "to promote the highest quality of basic and applied evidenced-based and peer-reviewed research" into ME/CFS then they would joined forces with Invest in ME Research.
The international collaboration was in place and building momentum since the first Invest in ME Conference of 2006; UK researchers leading in their own fields were keen and getting involved in ME/CFS research; a UK Centre of Excellence for ME was being developed with international collaboration; they were 'collaborating / energising / mainstreaming / investing' etc. in ME research - all the things the CMRC talks about doing or aiming to do.
 

Binkie4

Senior Member
Messages
644
Yes he has given a full and detailed response as would be expected from the Medical advisor to one of the largest ME charities. - He invited David Tuller last Christmas to the cotswolds.

I hope you are fully satisfied with that answer. What more do you expect from ourME charities?

@Yogi

Thank you for your reply. I read recently Dr Shepherd's response about his inviting David Tuller to the Cotswolds last Christmas. Sounds festive.

My question referred more to Prof Holgate's letter to David Tuller offering the full support of the CMRC to Prof Crawley.

There have been enquiries on the AfME fb page about their position on this but I have seen nothing on the MEA position hence my question.

I would be glad to know the MEA's ( as a member of the CMRC) stance.
 

Demepivo

Dolores Abernathy
Messages
411
@AndyPR don't worry too much about FB.

With AfME, it's the office junior Joe who posts the stuff under instruction from Clare & Sonya. Absolutely no influence :S

MERUK is a smaller operation, so any messages via email will be read.

With MEA, it's a bit more hit & miss. Tony Britton does their social media. Best just message Charles Shepherd on here.

Hope this helps
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Should we set up in the advocacy section for everyone to contact ME Research UK and MEA and AFME (the CMRC supporters) before they make their minds up. We could provide the email and telephone numbers for everyone to contact. They might just support Crawley but if they hear from all their members and those who have fund raised for her in the past they may support patients for once in their lives?????

What do you think???

I think the CMRC are cruising fast down a highway with NO EXIT.
It will be our good fortune if they disappear or hit a cement wall but they will not change course.

In my opinion AfME will carry on especially as it has money which translates into the ability to promote itself enabling them to pick the low hanging fruit of the newly ill (and often young) people who are unawares. Sonya Chowdhury's job depends on remaining connected to the pyschosocial group without whos support there would be no paycheck.

MEA would serve the community best by separating. While both charities are in CMRC AfME is the 'official' channel and spokesorg of all things ME -- the go to org. I cannot say this enough. The MEA do not have the same influence with the outside media that are happy to continue promoting the party line. Having a charity that stands against them would mean that for balance media must have both views as patients support the charity that represents them.

As to what to do about it?
Continue to isolate the contagion. Get local media in the UK to accept well written articles on ME.
AfME will have to go down with the psychosocials.
 
Last edited:

RogerBlack

Senior Member
Messages
902
But it does suggest that the CMRC thinks good science is anything that gets past peer review.

I am reminded of the time I tried to edit wikipedias 'David Icke' page on the claim that he was a 'serious politician', only to find that it was actually published in a peer reviewed journal.
(Admittedly, an english journal that probably diddn't do anything past examining the quality of the prose)

For those not familiar, his main political platform (as much as it might be called that) is that existing politicians and the royal family are in fact lizard people.
 

Chrisb

Senior Member
Messages
1,051
"Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair."

I am being slow to-day. You will already have picked up on this. That "full" must be interpreted as "unanimous". Either Holgate must explain this away, or someone else must.