PACE Trial’s Forbidden Fruit: AYME Make Final Statement

by-their-fruit

By their fruits you will know them

Following an action from patients asking their representing organizations to support their interests, ten have come out in support by writing to Queen Mary University London calling on them to release the anonymous PACE trial data.

One, the Association of Young People with ME (AYME) ignored patients at first. I wrote them an open letter, and they  finally said they would discuss the issue at their Board meeting in March and make a final statement on the matter. That statement, which I just received by email, is copied below:

QMUL research data: Chair of Trustees states Board’s final decision

In recent weeks, the Board of Trustees of the Association of Young People with ME (AYME) has received requests from individuals within the ME community that they write to Queen Mary University London (QMUL), asking them to release the anonymised PACE data to researchers. At the board meeting, held on the 3 March, the matter was discussed, with the board unanimously agreeing on the following:

The QMUL data has already been released to and reanalysed by the Cochrane Collaboration (perhaps the most rigorous of research teams), which came to the same conclusion as the original researchers. This release to a bona fide researcher who has an ethical duty of care for the data complies with a condition of MRC funding.  For the same reasons, it remains open to other bona fide researchers to request the data, subject to the same ethical undertakings.  Therefore there is no requirement for AYME to write to QMUL and we will not be doing so.

AYME continues to care for, connect with and campaign on behalf of all children and young people affected by M.E./CFS, and this decision is fully in line with our work. No further comment will be made regarding our position on this matter.

M Ellis Chair of Trustees, on behalf of the Board

[to avoid confusion M Ellis is their Chair and is unrelated to myself]

This is a very surprising statement as it flies in the face of patients’ interests. AYME have isolated themselves by taking a stance in opposition to all the other charities. When the PACE data is released, and if it shows that ‘recovery’ was inflated several-fold by the post-hoc changes in recovery criteria then everyone’s first question will be, who took action to keep that a secret? And the second question will be, why?

I will investigate and attempt to answer that second question in my next blog posts. As a patient I cannot accept a charity that has conflicts of interest that trump patients’ interests. It’s time to bring the facts into the light.

19 thoughts on “PACE Trial’s Forbidden Fruit: AYME Make Final Statement

    • You couldn’t make it up, could you. Clearly, patient interests’ are not high on AYME’s agenda, so I can’t fathom why anyone would support them but I suspect many of their supports are just unaware of AYME’s actions. It is notable that this statement does not (so far as I can see) appear on the website or on their social media. I don’t think they want their members to know.

      Liked by 1 person

      • It’s so very sad to think how desperate, unsuspecting parents find some relief (at first) on finding AYME. They join in good faith, trusting their poor children will finally get some help and support. It is infuriating to think how many lives they must have made worse or even hell with their recommendations. My heart goes out to all the parents and children.

        Liked by 1 person

      • Speaking of which, I hope TYMES Trust will make their website more attractive and accessible. I can imagine that many parents who do an Internet search end up with AYME merely because ‘they look good’. I have been meaning to mention this to Jane Colby for a long time, but a good website is costly. Still it’s something that should be done and also, the search function should be increased. I bet it’s much easier to find AYME than the ‘good guys’. If you google ‘children with ME’ Ayme pops up. If you google Chronic Fatigue Syndrome, Children, AYME is on top of that search. It goes on and on. TYMES literally does not come into the picture, they seem obscure. Not good at all.

        Liked by 1 person

      • I was thinking this the other day as well, about TYMES Trust’s website. It does matter and I’d really like TYMES to become the top young person’s charity on the net as well as in real terms.

        Liked by 1 person

      • Gee – all Tymes Trust would have to do (as a start) would be to put tags in the source material for the website – surely somebody could offer to do it for them. Much better for families to find a more unbiased resource.

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    • Yes it was a copy and paste job, by the looks of things. They addressed it to “Mr Clarke” so they presumably did it in a hurry – I guess because so many patients have contacted them on this issue. Shame they don’t care what patients tell them.

      Liked by 1 person

    • Well, it is definitely my impression that AYME exists to funnel patients into Esther Crawley’s tender mercies. She can’t run studies without victims, ahem, patients.

      One wonders if it also serves as a marketing arm for the Lightening Process.

      http://www.ncbi.nlm.nih.gov/pubmed/24304689

      “The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study).”

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  1. AYME and AfME are both closely linked to Esther Crawley, who is one of the Wessely circle.
    Their booklet of advice for parents cites the PACE results as a sound basis for their treatment approach. This is fundamentally that after doing symptom relief, setting a baseline thet doesn’t cause relapse, a gradual increase in activity is the road to recovery, whether the approach is pacing, CBT, GET or GAT. (Graded Activity Therapy). There is no recognition of the potential harm due to the fact that the aerobic metabolism in ME is dysfunctional.

    I believe that Esther Crawley is also undertaking a research program to test whether the Lightning Process may help children, despite many warnings and objections that this could be dangerous for children..The Lightning Process is in my view an abusive and very dangerous misuse of the powerful motivational powers of NLP…essentially CBT on speed. i am among thise who have written to them about this. As a psychotherapist who uses NLP where it is
    appropriate, (for depression, anxiety, phobias, as well as enhancing performance) I am particularly alarmed by this misuse. I wouldn’t use NLP to get someone with pneumonia to think they didn’t need to rest! Or a person with ME.

    Parents of children with ME should turn to the Tymes Trust for much sounder advice.

    In sum, AYME and AfME appear to be part of the Wessely camp, so are not likely to support access to the data.

    Isn’t it odd that they think people who want to see the data want to ruin their reputations? Surely the release of data from a scientifically and ethically sound piece of research would be the quickest way to enhance their reputation and silence their critics?

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    • AfME have written to QMUL to voice their strong support of patients that the data should be released. See https://autodidactauthor.wordpress.com/2016/02/15/pace-trials-forbidden-fruits-the-fruit-of-your-labour/ for a full list of those who have supported patients.
      I am concerned by a number of things people have sent me in recent weeks about AYME and I’ll be writing about that before too long. If anyone has any other facts to pass on about AYME then please get in contact with me.

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      • Hi, as a parent living in the UK who’s had two children fall il with ME, I looke for support and discovered there were two charities supporting families cf children with ME, I joined AYME because they offered a really helpful forum for parents which was a lifeline in the early years while we were finding our way in the mine field that is ME. The forum continues to be helpful for many parents, it operates with parents as moderators, without any interference from ayme staff tha I could tell, indeed tymes trust got regular mention as another place to look for help or info.

        For the first few years the website was balanced and helpful, updated regularly, etc. Then it all changed, probably when their medical adviser changed, and the focus shifted to their version of activity management, even tho there is no research to support this programme with children. At one point they claimed there was research showing 94% recovery (don’t we wish!) for children following this approach. I asked for the reference and eventually they provided it. And it was to do with recovery rates for children at 4 hospitals in the US on the 1990s, nothing to do with any particular treatment approach. Eventually they removed the reference to the research and promised to add balance to the page on activity management– to date that still hasn’t happened, but they did reinstate info about pacing after I provided them a copy of their previous page, which was no longer on the website.

        Since then they have published the dreadful leaflet for GPs, this one referencing research on recovery rates that hasn’t yet been published (I asked for a reference). I have concluded they just don’t get the importance of sound research, and that you shouldn’t reference something not yet accepted for publication (as far as I can work out it still hasn’t been published over a year later). This is a serious weakness for a national charity IMO.

        I’m happy to be contacted should you wins to know more, I took copies of the web page in question before and after.

        Keep up the good work!

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  2. To my knowledge, both AYME and Action for ME currently support Dr. Esther Crawley’s SMILE trial of a non-medical training programme in children newly-diagnosed at her CFS/ME clinic in Bath. I have seen no concern raised by Action for ME about her MAGENTA trial, which is based on two of the ‘treatment’ arms of the PACE trial.

    Action for ME is the charity responsible for the PACE trial, published in The Lancet in 2011. They had six years in which to support calls for release of the data, or denounce the trial, or correct the misrepresented conclusions about treatments, or make a full and frank public apology for their role in the PACE trial, available to the international patient community, given the reach of adverse effects of the PACE trial, and subsequent papers based on the original data.

    Ever the optimist, at this moment in time, I do not believe that the public statement of support for calls for release of the PACE trial data by Action for ME is genuine. I believe that this has been made for PR / damage limitation purposes. Expert scientists had joined the call and your initiative put Action for ME in a corner Clark, such that there was really only one way out.

    Although responsible for the PACE trial, Action for ME seemed to have got away with letting down the patient community for the same reasons you are noting about AYME, The unwary would see nothing from either charity’s website or publications to cause suspicion that they are not serving the patient community well. I believe this is partly because some of their material dates to back to when they had different (better imo) medical advisors and patrons. Action for ME had a rescue mission on its hands when the PACE trial paper was published in 2011, but the job really wasn’t that hard, as their members trusted them, aside from some dissenters hoping to influence from within, and the newly-diagnosed would be unaware. As an establishment charity, with support from the Science Media Centre, they have a public platform as the patient voice.

    When Action for ME CEO of five years stood down, the trustees employed a CEO, whose career in the charity sector had involved being “heavily involved in policy, politics, fundraising and strategy”. I have seen comments along the lines that Action for ME was under new leadership with the appointment of a new CEO, but trustees run the charity, the CEO is an employee. I hoped the new appointment was a sign by the Board of Trustees that Action for ME was about to leave the biopsychosocial path, but saw that this was not the case.

    Action for ME has since been consistent in defence of the PACE trial. They gave their reason for ‘campaigning’ for more or the same fatigue clinics based on the English model as ‘CBT and GET help some people’, stating this on their facebook page, just prior to their public statement supporting release of research data.

    The Tymes Trust publication ‘Behind the Scenes of the CFS/ME Research Collaborative’ shows that the Action for ME CEO is willing to go with the flow at important meetings, contrary to the charity’s description as the leading UK charity, and takes on the role of writing for public consumption, which I don’t believe is simply for the sake of readability.

    It hurts me to doubt or criticise any charity that purports to represent patients. I am always willing to give the benefit of the doubt and believe the best of individuals and organisations, but I have been misled and let down by charities like Action for ME too often to trust what they say in public, until that accords with what they do behind the scenes at APPG, MRC etc.

    I expect to see evidence that a charity (especially one that pays such a high proportion of its income on salaries) actually takes real and effective action for ME (WHO ICD-10 G93.3).

    Thank you for your work on this Clark.

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  3. Follow the money. People only do what they think is in their best interest. There’s a quote somewhere about it being very hard to get people to change when it is in the financial interest not to. I’m too tired to dig it up – sorry.

    Makes you wonder whether they’re spending the money they get wisely – I don’t like hearing about large salaries for people heading charities. They always claim it’s necessary. Funny thing, that.

    So they’re going to hold their position opposite of everyone else. Is there a supervising agency that needs to be notified about any of this? I even signed the petition!

    Thanks for posting.

    Liked by 1 person

  4. And now, unsurprisingly, AYME have totally failed to give any support to the excellent Dr Nigel Speight, following the highly vexatious attempt there has been to silence him with a complaint to the GMC. From AYME’s statement:

    Many families were helped and supported by Nigel Speight’s knowledge, kindness and generosity of spirit, during AYME’s early years. Nigel was the charity’s Medical Adviser and then Patron until 2009. He resigned from his position because he had a different of opinion from that of AYME on matters to do the management of ME. AYME’s philosophy of respecting patient choice has never wavered withstanding the need to ensure the safety of the child being paramount.

    During the time when Nigel acted as AYME’s Medical Adviser, the charity’s Chief Executive spoke on his behalf at a previous hearing. Following Nigel’s decision to resign as Patron in 2009, AYME does not consider it appropriate to lend its formal support on this occasion .

    Mary-Jane Willows, Chief Executive

    http://www.ayme.org.uk/news/-/asset_publisher/2uYbtahTJKdk/content/dr-nigel-speight-april-2016?redirect=http%3A%2F%2Fwww.ayme.org.uk%2Fnews%3Fp_p_id%3D101_INSTANCE_2uYbtahTJKdk%26p_p_lifecycle%3D0%26p_p_state%3Dnormal%26p_p_mode%3Dview%26p_p_col_id%3Dcolumn-1%26p_p_col_count%3D1

    Establishment stitch-up, as per usual.

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  5. Pingback: Why I am signing the petition to oppose MEGA | The Self-Taught Author

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