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Launch of inclusive UK CFS/ME Research Collaborative

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 30, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
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  2. Sasha

    Sasha Fine, thank you

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    Thanks, Simon - great article. I think a lot of us in the UK are simultaneously feeling excitement and caution. There's a lot of potential for great progress there but the psychological school has a very powerful grip on the media and the medical establishment and is deeply vested in its position. I think it's going to be a very interesting first six months with what have been seen as opposing forces inside that same tent and I'm looking forward to seeing what will come out of it.
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  3. Simon

    Simon

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    Thanks, Sasha

    Yes, we don't know how things will turn out, but I am optimistic this will be very good for biomedical research. Stephen Holgate has been a key figure working in this for several years - as head of the MRC CFS/ME Expert group before this. That too involved both biomedical and psychological researchers, yet the main thing to emerge from it was the MRC's first ever ring-fenced fund for biomedical research. With him as Chair I don't think there is much danger of it being 'hijacked'.

    At the same time I don't think there has to be a problem with having researchers with competing viewpoints in the same collaboration. There are researchers with competing viewpoints in many fields, and even where researchers share a similar viewpoint there can be immense competition between them (virology, for instance, has been described as a 'contact sport', which is perhaps one reason why the whole XMRV thing became so heated). This isn't necessarily a bad thing, and such competition can drive research to greater heights. Arguably one thing CFS has lacked has been robust testing of competing hypotheses, and such rigorous testing playing out in journals could be a positive step. What would help is all researchers working together to maximise interest in and funding for their field and hopefully that will happen here. It should be an intersesting ride.
  4. Esther12

    Esther12 Senior Member

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    Nice one Simon. Another good article for PR... you're on a roll now. I'd certainly like to see a robust testing of hypotheses for CFS - ideally before they'd been allowed to affect how patients are treated.
  5. Simon

    Simon

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    :) And thanks
  6. snowathlete

    snowathlete

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    Thanks Simon, a very well-pitched article! And informative, as always!

    I am cautiously optimistic that this collaborative will be a positive thing on balance. Sure, we'll continue to get some dodgy science in the UK, some of which may even come from within this collaborative, but we know that we'll get some good research from this collaborative too, because some of the people involved have already shown their support for ME/CFS being a physiological condition.
    It's also very hard to change things from outside as you dont real dialogue with those people who hold conflicting views, if you are not involved and when those people inside have the attention of the press and you dont, so hopefully this collaborative will be beneficial in that regard – Newton’s muscle work already being covered in the Times, to me, seems like quite a big step forward.
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  7. Sasha

    Sasha Fine, thank you

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    I agree - although I'm cautious I think it's a great idea to have everybody in the same tent because each camp gets exposed to evidence on the other side.

    Edit: There seem to be a lot of camping metaphors creeping into my prose! :D
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  8. maryb

    maryb iherb code TAK122

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    You asking me to share a tent with creepy crawley's;)
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  9. jimells

    jimells Senior Member

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    It's a camping tent? I thought it was a revival tent, or maybe a circus tent...

    I just have one little itty bitty question: How much money did they budget for research?
  10. maryb

    maryb iherb code TAK122

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    [quote="jimells, post: 351706, member: 4373 ........ or maybe a circus tent... [/quote]

    :lol::lol:
  11. Sasha

    Sasha Fine, thank you

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    I think they're basically a network and they want money (forming a consortium is often a good way to get it):

    However, it's already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too.
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  12. Simon

    Simon

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    ME Association poll: patients narrowly in favour of charities joining the new collaborative
    As of 7.45pm GMT only 73 votes cast, so this is really just for fun, but:
    In favour: 51% (definitely 22%, with caution 29%)
    Against: 43% (definitely not 33%, probably not 10%)

    Tiny sample, though not quite the ringing endorsement the charities were presumably hoping for.

    Thanks to @TomKindlon for tweeting
  13. Esther12

    Esther12 Senior Member

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    I'm surprised so many people are voting 'definitely not' - so far I can't see any reason why the MEA's involvement is a bad thing. I rarely go for 'definitely' anything! I went for 'yes - with caution'.

    I understand people being wary though, given the way it was promoted, failure to acknowledge past problems, and some of the people involved.
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  14. Firestormm

    Firestormm Senior Member

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    Dr Shepherd in reply to some concerns expressed on Facebook yesterday:

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  15. Simon

    Simon

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  16. Simon

    Simon

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    notes from AfME trustee who was at the meeting

    Tony Golding's report here, but I've highlighted some key points [all bolding is mine]

    120 researchers at the conference, plus another 20 others, which is a pretty impressive turnout.

    Encouraging things about funding
    This is very encouraging, especially as he has published on CFS before, and was involved in the MRC CFS/ME Expert Group, and gave a talk at last year's IiME conference: "An Overview of Neuro-inflammation in Chronic Disease"


    More interersting stuff from Stephen Holgate

    from presentations about specific projects
    concluding comment from Stephen Holgate:
    Thanks to Tony Golding for making these notes and to AfME for publishing them.
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  17. Enid

    Enid Senior Member

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    Looking positive to me at last - thanks Simon.
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think MEA should be at the table, which doesn't mean they should give in to the fake science. Quite the opposite. They must speak up against any fake science that is attempted within this collaborative.
  19. Simon

    Simon

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    Great, that's made my day :)

    Latest from the ME Assoc poll: 56% 'Yes, join in' vs 36% No

    Just one more thought: the 5 ex 10 success rate for pitches to the MRC mentioned in Tony's report is very high, and even more strikingly the MRC immediately launched another highlight notice inviting more proposals after funding the 5. Previously, it had always been argued that the problem was simply the lack of good proposals to the MRC and that's why biomedical work wasn't funded. Stephen Holgate commented:
    That's a huge turnaround.
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  20. nasim marie jafry

    nasim marie jafry

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    Great article and summing up of the state of play, thanks! While I welcome all research into properly defined ME, I don't trust the biopsychosocials a jot, my hope is they will now fade away and leave the field of research open to true scientists, I blogged here last week: http://www.velo-gubbed-legs.blogspot.co.uk/2013/04/too-much-lactic-acid-in-her-legs.html

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