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The ME Association to remain with the CFS/ME Research Collaborative

Discussion in 'General ME/CFS News' started by AndyPR, Jun 16, 2017.

  1. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Well, looks like the MEA enjoy all the circus acts that take place in the CMRC big top, so are going to stay in there...

    Full quote but original can be seen here http://www.meassociation.org.uk/201...he-cfsme-research-collaborative-16-june-2017/
     
    Jan, justy, Jo Best and 15 others like this.
  2. slysaint

    slysaint Senior Member

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  3. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Yep, not wrong there.

    If their statement is genuine, I just think they are grossly overestimating the amount of influence that they have over anything that goes on with the CMRC.
     
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  4. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    It seems a pity to me that the MEA seem to only have taken into account in their discussion the recent screenshots showing Esther Crawley denigrating patients and accusing patients and David Tuller of harrassment and being anti science. I can see that on its own this may not have been held to be sufficient evidence not to continue to work with her, though I disagree with them.

    BUT...

    I don't understand why they didn't at the same time look more closely at Crawley's whole approach to research - the FITNET advertising campaign claiming success before the trial started, the trial of the Lightning Process on children, lots of published studies that conflate the symptom chronic fatigue with CFS/ME, and countless small studies she has put her name to that make completely unfounded deductions of causation on the basis of slight correlations, such as blaming mothers.

    She has repeatedly demonstrated that she is unfit to work with children with CFS, and is completely unscientific in her research methods. And Stephen Holgate supports her and all her work without question. Neither has expressed any concern about the whole PACE scandal, indeed Crawley calls it a great trial.

    With these two individuals as chair and deputy chair of the CMRC, and their cheerleader, AfME running the secretariat and supporting them unquestioningly, I can't see how the MEA can consider the organisation ethical or suitable to be at the heart of ME research in the UK. Nor can I see them having a snowballs chance in hell of influencing the direction of the group.

    And now we hear from the MEA statement that the CMRC is taking on the role of discussing funding for ME research at national and international level. This places Crawley as king pin in the whole of British ME research funding decisions - a deeply disturbing development.

    I am very disappointed in the MEA.
     
  5. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    If the MEA feel that they have influence within the CMRC then surely they can give us examples of where they have been able to use that influence. As a current MEA member, I would like to know that my association is spending it's time wisely and achieving results - if examples can't be given of any results then I would question why my association is spending it's time within this organisation.
     
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  6. BurnA

    BurnA Senior Member

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  7. Esther12

    Esther12 Senior Member

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    And under-estimating the harm that their continued membership will do, by legitimising the CMRC and allowing them to claim continued support from patients. It now seems clear that the CMRC is getting in the way of attempts to raise standards in a way that will be uncomfortable for those researchers who have built careers on junk-science.

    Does Esther Crawley have the MEA's support to continue in her position at the CMRC?
     
    Bidding lady, Esperanza, Jan and 17 others like this.
  8. slysaint

    slysaint Senior Member

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    they also appeared to have overlooked her recent participation in the MUPPETS conference, and participation in a series of talks with Peter White and Simon Wessely; quite apart from all the dodgy research papers she has churned out.................plus of course the whole MEGA debacle.

    I don't get it, the same as with AfME.

    Is there anything on FB?
     
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  9. Londinium

    Londinium

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    Sooo... as a long-time lurker who has only just opened an account I'm going to hesitantly dip a toe in the water here and, with trepidation, say I support the MEA's position for now. It's entirely a utilitarian argument, but this looks like the best chance to get MRC to provide funding for biomedical research into ME. If that means the MEA needs to work with those we would rather weren't involved then unfortunately, for now, I think it's a compromise worth making. My view would change the moment it comes evident that funding is being proritised to biopsychosocial research.

    I say this on the basis of the alternative: the BPS crew have managed to build a picture in the UK that ME patients are mentally ill and hostile to researchers. If patient groups refuse to engage with the CMRC before it even really gets going then that feeds into this picture. It would be portrayed as 'these people are beyond help'. Therefore, I think it's important - imperfect though it is that BPS researchers are involved - that the MEA engages with the CMRC. As I say, if the CMRC then just funds BPS research then my view would change. But cautious engagement for now remains, IMHO, the best (or least worst) approach.
     
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  10. slysaint

    slysaint Senior Member

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    Have you read all the info on MEGA? I don't just mean the official statements btw.

    Is this really what 'we' want/need that funding spent on? Although there is much 'talk' about biomedical research this might only happen way down the line.
     
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  11. BurnA

    BurnA Senior Member

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    Hmm. I think if the MRC wanted to fund biomedical research into ME they would have done it by now.

    At some point it pays to cut your losses and realise that by supporting the CMRC you are legitimising the research of all it's members.

    Too much harm is caused by following this approach.

    We don't need the CMRC and while funding from the MRC would be nice why should this have to come via the CMRC.
     
  12. Esther12

    Esther12 Senior Member

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    Welcome to the forum!.. now please allow me to bite your toe off.

    The CMRC has been going for a while now - since 2013. I was in favour of cautious engagement at the time, but the way they have acted about the controversies surrounding PACE have made it clear that they are making progress harder, and that they're there to serve the interests of researchers, not patients.

    So long as the UK research community is so influenced by prejudice about ME, do we even want more money to be given to them for research? It seems to keep doing more harm than good. The priority should be to raise standards, and make it clear that researchers will not be able to go on getting away with shoddy research, spun results and the smearing of patients and critics. At the moment we cannot assume that attracting more research funding, even for work which looks like it could be useful, will be a good thing in the UK. Anything which serves to entrench the position of researchers like Crawley will be a bad thing for patients in the medium to long-run.
     
    Last edited: Jun 16, 2017
  13. Demepivo

    Demepivo Dolores Abernathy

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    Rather lame response to EC at the Renal Conference & Muppet-gate from the MEA.

    Psycho-socialists on the CMRC aren't exactly quaking in fear!
     
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  14. Esther12

    Esther12 Senior Member

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    I was just reading a blog about the setting up of the CMRC, which included this statement from the MEA:

    http://phoenixrising.me/archives/16786

    It reminded me that the quote about being 'inside the tent' was actually about trying to keep people in the tent in order to limit the harm that they can do to you through their opposition.

    As someone who, like Tuller, is now outside the CMRC tent, it feels like I'm getting wet.
     
  15. Esther12

    Esther12 Senior Member

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    LOL - some comments from me on the CMRC at the time

    Whoops...

    I was still a bit concerned a couple of months later though:

     
    Last edited: Jun 16, 2017
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  16. Valentijn

    Valentijn Activity Level: 3

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    This hasn't happened yet, why would it start happening now?

    All of the funding goes to BPS quackery. The CMRC is doing a lot to harm patients and little or nothing to benefit them.

    So we should be held hostage by hate speech from supposed researchers, to the extent that we should support something doing us harm? That's frankly absurd.

    I'm also very disappointed with the MEA. They're legitimizing quackery, even if that's not their aim.
     
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  17. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Just like to add my disappointment at the MEA's position. I find the chummy dinner and drinks bit particularly distasteful.

    Very sad but their ongoing silence since the events already told us their position. They have now well and truly tied their colours to the mast of the sick ship "sleaze"

    My membership will not be renewed., especially if some of my money will be used to prop up the BPS careers.
     
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  18. Demepivo

    Demepivo Dolores Abernathy

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    The MEA's motives seem to be to get people to cancel their membership & give the money to David Fuller, who will do what the MEA & AfME aren't.
     
  19. Demepivo

    Demepivo Dolores Abernathy

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    PS an article I've just read on stupidity.

    https://www.theguardian.com/lifeandstyle/2017/jun/16/oliver-burkeman-laws-of-stupidity-donald-trump

     
    Last edited: Jun 16, 2017
    Jo Best, Valentijn, TiredSam and 3 others like this.
  20. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    In the UK this is irrelevant as any biological research emanating from the UK will be plugged into the mind/body paradigm of the illness. The whole point (for everyone else) is to find a cure and in the interim perhaps effective treatment that leads to significant Quality of Life. But for the Psychosocials the only purpose of any research is to provide a rationale for using their preconceived ideas.
     

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