The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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AYME refuses to call on QMUL to release PACE data

Discussion in 'General ME/CFS News' started by Sasha, Mar 6, 2016.

  1. Sasha

    Sasha Fine, thank you

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  2. Denise

    Denise Senior Member

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    Thanks @Sasha for posting this link.
    I look forward to Clark Ellis' upcoming post.
    Interesting that AYME's comments reference the same Cochrane review in Coyne's new post.
     
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  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Boo. Hisssss.
     
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  4. Sasha

    Sasha Fine, thank you

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    Terrible decision, and reasons that don't tally with the facts.

    The decision came from a board meeting but I can't tell from their site who is on their board. All I can see from their "about us" page is that their CEO is called Mary-Jane Willows.

    http://www.ayme.org.uk/more-about-ayme
     
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  5. Esther12

    Esther12 Senior Member

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  6. Sasha

    Sasha Fine, thank you

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    I agree. Just because they say they won't say anything else doesn't mean that people should stop asking them questions because (a) they're clearly very confused about the issues and (b) as a charity, they have a responsibility to their members to inform themselves and base their actions on a sound understanding of the facts. They could hardly be further from having a sound understanding.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    This seems very odd.

    Firstly, I was under the impression that the Cochrane review was written by the same people who did the PACE trial, so it would seem to be releasing the data to themselves - hardly releasing to independent researchers.

    And if it was not the same people then all the arguments given by QMUL against releasing the data would seem to be invalid - being too expensive, interfering with future studies, breaking confidence, threatening the reputation of the team.

    I had not heard of any such release but one way or the other it would seem to be a clear argument for insisting on release to truly independent researchers - who are asking for the data.

    I find it very hard to understand the motive for a decision like this from a charity.
     
  8. Riley

    Riley Senior Member

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    What is AYME?
     
  9. AndyPR

    AndyPR Cookies for Tired Sam

    The Association of Young People with ME, a UK based charity.
     
  10. worldbackwards

    worldbackwards A unique snowflake

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    Eh? What utter waffle.
     
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  11. JohnCB

    JohnCB MEow

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    We haven't had anyone here to present the view of AYME. I don't know them but I thought I would try to think through what their viewpoint might be. OK, so really this is guesswork from me.

    They are a small charity and money is very tight. Most years they run a deficit I think. A major source of income for them is corporate giving. They don't charge for membership as they represent children. So I think first of all they don't want to be involved in controversy.

    Secondly one of their activities is crisis intervention. I guess this is negotiating when social services or mental health tries to take kids into psychiatric units or away from their parents. We've all heard the horror stories so I think this is important work and once again they want to be free of controversy and on good terms with pediatric ME/CFS services and doctors. They can't avoid dealing with these people, who hold the power.

    Thirdly reading between the lines of their email, especially the last paragraph, I think they are saying "Go away, this is not the kind of thing we think about on the board. We campaign on different issues to the adult organisations." Maybe they would not have said anything one or the other if they had not been pressed.

    Their email does not say the object to the release of the data and it does not say they object to us pursuing it, but they don't want us to draw them into this issue. I think that is what they are saying.
     
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  12. worldbackwards

    worldbackwards A unique snowflake

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    Crucial to understanding their response is knowing that AYME are the only ME charity who clearly promote the use of CBT and GET. Mary-Jane Willows is all in favour. Esther Crawley is involved with the charity, which rather blunts any help they give to parents in trouble as they won't intervene in cases that involve her.

    Ultimately there is a conflict of interest here: PACE validates their position, one that Mary Jane Willows helped to foist on ME patients at large as a member of the GDG for the NICE guidelines. Why would they want to put that at risk? And low and behold, they've failed to endorse some people who might do so. Colour me astonished.
     
  13. sarah darwins

    sarah darwins I told you I was ill

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    You can see the list of members of the board of trustees (as of Dec 2014) in their financial statement for that year, here:

    http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20141231_E_C.pdf

    In fact, more up-to-date list here: http://apps.charitycommission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0

    You can usually find stuff like this for non-profits through a search on the public record Charity Commission website: http://apps.charitycommission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0
     
    Last edited: Mar 6, 2016
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  14. Bob

    Bob

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    They haven't avoided controversy: they've actively decided to create controversy by parroting the PACE authors and going against the interests of the patient population by arguing against transparency.
     
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  15. Sasha

    Sasha Fine, thank you

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    This seems odd:

    http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20141231_E_C.pdf

    It sounds as though BACME doesn't have its own bank account and is sufficiently close to AYME to have AYME handle its money.

    Here's BACME's statement on PACE (on its website):

    http://www.bacme.info/aboutbacme/pace_trial.html

     
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  16. Sasha

    Sasha Fine, thank you

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    More on the AYME/BACME connection:

    http://www.ayme.org.uk/news/-/asset...k/content/bacme-conference-summary-march-2015

     
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    AYME trustees:

    Dr Jill Moss
    Mrs Vanessa Gwynn
    Mr Colin Batten
    Mr David Gillow
    Mr Eric Mercer
    Ms Laura Billingham
    Mr Peter Barnes
    Mr Mark Ellis
    Ms Emma Foulkes
    Ms Caroline Sunley
    Mrs Nicole Sabina Dawson

    http://apps.charitycommission.gov.u...steredCharityNumber=1082059&ReportType=COLOUR

    Just edited list which does not match the list from link below but the date of the report for list above is March 2016

    http://directory.uk-b2b-info.com/org/charity/1082059/association-of-young-people-with-me-limited/

    I found this by looking up AYME by their charity registration number.

    I believe in transparency and accountability.

    Further Edit: just cross posted with scarecrow
     
    Last edited: Mar 6, 2016
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  18. Scarecrow

    Scarecrow Annie Gsampel

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  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    Don't know why I didn't see @sarah darwins link to the info.
    Need to learn to read through whole thread.
    Let's pretend I wrote that 100x :lol: :rolleyes:
     
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  20. Scarecrow

    Scarecrow Annie Gsampel

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    There are just too many words in this place and most of them don't cooperate when you're trying to read them.
     

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