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A Little Poisoning Along the Road to ME/CFS
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UK Research Collaborative means business

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 4, 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. WillowJ

    WillowJ Senior Member

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    thanks for info, Simon
     
    Simon likes this.
  3. Enid

    Enid Senior Member

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    Thanks Simon though I fail to see what White is doing there unless sometimes it is necessary to "sup with the tiger".
     
  4. Firestormm

    Firestormm Guest

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    Bloody marvelous. Thumbs up from little-olde me :)

    Edit: Simon's previous article about this initiative is attracting comment and debate about this latest summary and can be found here.
     
    Simon likes this.
  5. Simon

    Simon

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    Peter White is very much part of the Big Tent approach tht Stephen Holgate has championed. Charles Shepherd said "part of the research agenda has to involve sitting down and discussing/debating with people you may not always agree with", but 'supping with the tiger' is neat.
    Thanks for your comments there too. I understand why people have reservations about this initiative, but overall I think it's a huge opportunity. With the likes of Stephen Holgate, Julia Newton and Hugh Perry backing it, I can see why most ME charities are there too.
     
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  6. Simon

    Simon

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    Charles Shepherd's case for the CMRC was omitted from the thread version of the full blog, so I'm including it here

     
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  7. Enid

    Enid Senior Member

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    Yes I do see the point Simon - let's hope those really up to date with current research outweigh any doubters still on the scene.
     
    Simon likes this.
  8. Dolphin

    Dolphin Senior Member

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    People can discuss/debate with Peter White if they like. Not convinced it is likely to change his views.
     
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  9. Dolphin

    Dolphin Senior Member

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    Time will tell what will happen.

    Another scenario that has occurred to me that could cause problems is that if groups like the ME Association and ME Research UK leave at some stage and one is left with weak groups like AYME, Sussex & Kent ME/CFS Society, maybe Action for ME (unclear if they'll revert to the weak AfME that Chris Clark led), etc. who just go along with pretty much anything.
     
  10. Esther12

    Esther12 Senior Member

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    It does seem that some patient organisations are led by those who feel it's sensible to just trust those who claim to be experts, while just campaigning for more money to be given to them. I'd like to see some more fiery patient organisations in there (even if I often disagree with them myself) just to mix things up a bit.

    I'd like to see patient groups push for the release of the protocol outcome measures for the PACE trial through this organisation too. I'd be interested to see the responses from those others involved too: it might be a good way of seeing who is really interested in helping patients, and who want to use this group as a way of papering over past problems.
     
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  11. Simon

    Simon

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    Think Peter White is as likely to change his mind as Julia Newton is to change hers. The Collaborative doesn't aim to produce a consensus view of the illness.
    Bad things might happen, but it's pretty clear from Charles Shepherd's comments that the MEA is very committed to making this work.
     
  12. Firestormm

    Firestormm Guest

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    I think if in the future these meetings were televised - we might actually 'see' and hear what is said by our representatives. It has not always been possible to see them in action so to speak. We only get to hear about the result - or non-result.

    Whilst in the USA these conferences - televised - are too much for me to watch/listen to pretty much all the time; at least they pull no punches. We as a community see it all and our more able (at the time) friends can try and summarise these things for us or we can revisit the event when we are feeling up to it.

    I am not saying that this collaborative will be live-streamed, or that it will be all of the time. But I hope at least that the conference - if it proceeds - will be. Or that this will be a public event.

    Anyway, just wanted to say that to be fair we don't always know what happens at meetings or behind the scenes and more transparency would be a good thing to have on this particular (and any other organisations) agenda :)
     
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  13. Esther12

    Esther12 Senior Member

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    More transparency would certainly be a great thing. Some of my concerns about this do result from a knowledge of how the British state has operated in the past - with transparency and openness not exactly being key-words. Maybe things have changed though. It would be good to have a video recording of all their discussions (and bugs in the corridors outside!).

    I think that we'd have far fewer problems around CFS if patients had been given access to researchers work/presentations/etc from the start.
     
  14. Bob

    Bob

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    Thanks for the summary, Simon.

    I've made a list of current members, just for reference (in no particular order)...

    Executive members:

    Professor Stephen Holgate, Southampton University - Chair
    Dr Esther Crawley, Bristol University – Vice Chair

    Action for M.E. (Sonya Chowdhury) - Secretariat
    Association for Young People with ME (Mary-Jane Willows, Matthew Wright)
    CFS Research Foundation (Peter Muir, Clive Kerfoot)
    ME Association (Dr Charles Shepherd)
    ME Research UK (Sue Waddle, Dr Neil Abbott)

    Professor Julia Newton, Newcastle University
    Professor Hugh Perry, Southampton University
    Professor Paul Little, Southampton University
    Professor Peter White, Barts and The London School of Dentistry and Medicine

    Non-executive members:

    Non yet elected.

    Observers:

    Medical Research Council (MRC) (Joe McNamara)
    National Institute of Health Research
    The Wellcome Trust.
    BACME
    Science Media Centre (SMC) (Ed Sykes)

    Proposed future members/observers:

    A nursing representative.
    A Member of Parliament.
     
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  15. Bob

    Bob

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    Also for reference, this is the CFS/ME Research Collaborative 'charter':
    http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-charter.pdf

    I've just looked up the voting system:

    3.4 Decision making
    3.4.1 All members will be eligible to vote at the AGM.
    (Note: It seems that this includes any non-executive members who may be elected in the future.)
    3.4.2 Voting will ordinarily be using a simple majority, and by a show of hands, but may be
    by ballot if the Chair so decides, in the event of late submission of items, or if requested by
    any two members.
    3.4.3 The Chair will not normally vote but, in the case of a tied vote, will have a casting
    vote.

    4.5 Decision making process
    Decisions (including decisions on membership) will be made by the executive on the vote
    of the chair plus at least 4 executive members (quoracy).


    And this is how the formal meetings are organised:

    3.3 Members meetings.
    Members of the UK CMRC will meet once a year at the annual general meeting (AGM). At
    this meeting, workstreams will present their progress in meeting objectives and
    researchers will be able to present research findings. Confirmation of elections to the
    executive will take place at this meeting (see Section 4). Additional meetings may also be
    arranged if members so wish.

    4.4. Meetings of the Executive
    4.4.1 The Executive committee will meet at least twice a year in addition to the annual
    members meeting.
     
  16. Bob

    Bob

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    Yes, that's what I've just been thinking, after looking at the list of members, and the voting system. Looking at the voting system (which is: one-member one-vote), perhaps it is a good idea for organisations like Invest in ME, and the TYMES Trust to become members. (They've both said that they don't want to get involved because of the make-up of the membership.)
     
  17. Esther12

    Esther12 Senior Member

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    Sounds like it would be well worth trying to dilute the influence of some of the worst patient organisations.
     
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  18. CaronR

    CaronR

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    Whenever the psychiatrists have been involved in ME projects, the result has been detrimental for ME patients and I don't have any confidence that this will be any different. The proponents of the biopsychosocial model may be in the minority on the exective board, but they wield a disproportionate amount of power and influence outside the collabortive. I dearly hope I'm proved wrong, but I fear this collaborative will merely give credibility to Peter White and Esther Crawley's research and beliefs and help to further their agenda, whilst dumbing down the biomedical position. I wonder how long it will take for White and Crawley to start discussing their research, beliefs and positions in the same breath as the 'Collaborative'. They have the ear of the media (and very much so of the SMC), the government, the MRC, NICE and GPs and now they can claim to be part of a collaborative, endorsed by most of the ME patient groups and charities. Am I the only one to see a very alarming danger to this?

    The alarm bells rang loud and clear for me with the launch press release, which highlighted psychological factors and absurdly inflated prevalence rates, which I assume were based on Esther Crawley's (very limited) research, which was studying chronic fatigue rather than ME, or even CFS. This may have been queried by such as MEA and will supposedly be discussed, but to be quite honest, the damage has been done as it has already been reported on and is in circulation. It's extremely difficult to withdraw damaging comments and I suspect nothing will be released to rectify the inaccurate information. Will this be the only time inaccurate and damaging information is released by the 'Collaborative'? With Crawley and White on the executive, I very much doubt it.

    I do agree that sometimes one has to get around a table with people you disagree with and I think that there is a lot of truth in keeping 'friends close, and enemies closer', but I also believe that there are times to take a principled stand. I'm more inclinded to believe that if the major patient groups and charities stood together and refused to share a platform with the psychiatrists who believe ME is a psychological condition, it would alientate the psychiatrists rather than stimie research into biomedical research. My fundraising efforts will definitely be going to Invest in ME or Tymes Trust rather than any of the groups associated with the Collaborative, which may potenitally and indirectly benefit the psychiatrists.
     
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  19. alex3619

    alex3619 Senior Member

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    There is something here I did not see before, a politically very astute move - at least potentially. If White and others with similar views are involved in the process, then they have a political/academic out for their past research. See, we are reformed, we help solve the puzzle. Its a face saving measure, and may make very big change in how ME is viewed more politically acceptable.

    Of course I am presuming the puzzle is fully biomedical, but thats the way the objective evidence falls.
     
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  20. Bob

    Bob

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    CaronR, I share many of your concerns, but this collaborative comes off the back of the MRC CFS/ME expert group, which had some of the same members, and which was also set up and chaired by Prof Stephen Holgate. And, in my opinion, the MRC expert group was a raving success, and absolutely transformed the way the MRC dealt with ME/CFS.

    You can see the research that the expert group managed to get funded here:
    http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P97_6648
    (Look at the list of "Currently funded projects", which came about after the expert group was formed. The "Recently completed projects" were organised prior to the expert group.)

    So I have some hope.
     
    aimossy likes this.

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