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CMRC - "Report of the fourth Annual Science Conference, 13/14th Sept 2017"

Discussion in 'General ME/CFS News' started by Andy, Jan 8, 2018.

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  1. Andy

    Andy Committee Member

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    52 page long PDF report at http://www.meassociation.org.uk/wp-...icial-Research-Conference-Report-Jan-2018.pdf
     
  2. Andy

    Andy Committee Member

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    Advancing Crawley's career?
     
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  3. James

    James Established Member (Voting Rights)

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    Holgate has CMRC on track so merger with BACME will be all part of the big picture no doubt a shame as there were hopes of honest neutrality rather than providing apologies for funding the biopsychosocial model by the MRC.
     
  4. Skycloud

    Skycloud Senior Member (Voting Rights)

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    How's a person with ME to read that lot I wonder? A page a day for a year? Thanks for posting though

    I don't think there will ever be an end to funding for bps model research this side of the end of the world/civilisation as we know it. What I'm hoping for is a complete reversal of of the balance of funding. The lions share to biomedical, and a small fraction for bps.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    I just skimmed through to the end:

    Right... what have we been saying about PACE Stephen? The most important voice... what was it saying? Did you listen?

    It's ridiculous for him to come out with that line at this point (unless it was part of an apology).
     
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  6. Valentijn

    Valentijn Not a moderator

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    It might be a good thing that psychosomatic researcher organizations have been merging. AYME didn't only merge with AfME, but the quack advising AYME was kicked off the bus, despite being the pediatrician for the child of AfME's chief executive.

    BACME and CMRC are almost purely composed of quacks, so that isn't going to change, but at least it would then be one organization acting and speaking out against patients instead of two organizations. And it certainly looks worse for them if they're one tiny extremist group in the background, versus the numerous patient charities and other organizations committed to real science.

    Their numbers and their influence are dwindling.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The small picture. ME/CFS is now an interesting or even a hot topic to the science world. A CMRC/BACME consortium belongs to another era.
     
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  8. Solstice

    Solstice Senior Member (Voting Rights)

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    That's how I'm interpreting this aswell. AYME and AFME merger was out of necessity and I'm sure this one is aswell. They're steadily losing backing, which is great for us.
     
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  9. Trish

    Trish Moderator Staff Member

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    So far I've only looked at the progress report on FITNET feasibility trial on pages 19-20 in the report:

    So from 500 referrals, they have 74 randomised, so presumably half of these, ie 37 actually doing FITNET. Edit - correction - 37 doing each arm of the trail.

    So with the 'losses' and withdrawal, that leaves something between 30 and 36 actually completing the 6 months. (edit - that would be for each arm of the trail).

    So at current recruitment rate it will take 10 years to complete the trial, and they will need about 5000 referrals to find sufficient recruits.

    So there is no control group. The trial is comparing two online packages, one CBT based, and one activity based. So how will they tell whether there is any value in either over doing nothing but staying home and resting when needed?
    Edit to add: She said: ''While most recover at six months with specialist treatment, less than 10% will recover without it.'' Does this mean they will use the 10% figure as their basis of comparison for claiming improvement? Deeply dodgy - didn't that figure come from their 'fatigue' epidemiological study?

    Is this a pilot that will be rolled into the main trial as happened with SMILE? Something to keep an eye on, I think. Including whether they change the primary outcome measure, which at present is the 6 month follow up questionnaires.
     
    Last edited: Jan 9, 2018
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  10. Londinium

    Londinium Senior Member (Voting Rights)

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    I read a chunk of this on the train home yesterday (first day back commuting in seven months following a relapse!). There's some good, some bad in there. As somebody who is in the minority that supports MEA engagement with CMRC, I hesitate to focus on the bad but the FITNET report did jump out, specifically:

    I seem to recall this stat had been debunked - that it was an artificial timepoint and long-term follow up showed similar recover rates? Can anybody provide a link for/against that assertion?
     
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    I just skimmed though this and pulled out a few bits that might be of interest to others. I've avoided pulling out bits mentioned by others, or referred to by Tuller in his blogs (about MEGA not being funded, etc).

    Something about Joint Hypermobility Syndrome at Gabrille Murphy's CFS service:

    But while most people I know with JHS value the diagnosis as a way of avoiding the CBT/GET that comes with CFS, they say:


    I've not quoted from the NHS-FITNET stuff, as someone else already did.

    Some stuff from Crawley about her ALSPAC work - isn't that just diagnosing 'CFS' with fatigue questionnaires? And then being excited by the fact that a tendency to answer those questionnaires negatively is correlated with a tendency to answer other questionnaires negatively?

    While the following all sounds good, it's from someone at Bristol Uni who has previously said "We have close links to the School of Social and Community at the University, working with Dr Esther Crawley who is the clinical lead.”

     
  12. guest001

    guest001 Guest

    "One delegate commented: "ME is more than just fatigue. Is the CMRC a fatigue collaborative, or an ME collaborative?""

    We don't have a name for this delegate then?
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    We don't have the answer either!
     
  14. guest001

    guest001 Guest

    Very true ;) although tbh I was expecting to have to wait for hell to freeze over for that :devilish::confused:
     

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