Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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PACE Trial latest: ME Association to pay for open access to independent [recovery] reanalysis paper

Discussion in 'General ME/CFS News' started by Tom Kindlon, Feb 12, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    wdb, ahimsa, J.G and 31 others like this.
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks very much to the ME Association for doing this.

    The authors, including me, couldn't afford the fee for open access.

    I have now donated £50 to the ME Association.

    ME Association donation.png

    [Aside: My comment on JustGiving contains a few typos, though I'm not sure that was my fault.]
     
  3. AndyPR

    AndyPR Senior Member

  4. Tom Kindlon

    Tom Kindlon Senior Member

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    The full fee is US$2900 but I think they bargained that down to US$2000.
     
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  5. AndyPR

    AndyPR Senior Member

    Thanks. So what is the protocol, is this something that the MEA has done "on behalf of" the authors? I ask as it could be something to consider in the future, if we have another study that would be useful if it was open access then we could try to crowd fund it.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member

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    I don't have any major insights. The authors agreed that we couldn't afford to pay for it. One person (not one of the authors) said they would contact the ME Association to see whether they would be willing to pay the fee.
     
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  7. AndyPR

    AndyPR Senior Member

    OK, thanks Tom. My assumption would be that the authors would have a say in it, unless all control with that sort of thing passes to the publication.
     
  8. charles shepherd

    charles shepherd Senior Member

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    Yes, we are paying a reduced fee of $2000 to cover the cost of making this very important PACE trial re-analysis paper open access

    The fee will be paid from our Medical Education Programme

    This money comes from genera funds - not from research funds (i.e. the MEA Ramsay Research Fund)

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  9. alex3619

    alex3619 Senior Member

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    It would be very helpful for advocacy if key papers were public. Crowd funding such things could be very useful.
     
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  10. AndyPR

    AndyPR Senior Member

    Charles, do you know if this, theoretically, could be done with any paper? Could the authors of a paper stop this happening or is the publisher in total control? Or does it depend on the publisher?
     
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  11. charles shepherd

    charles shepherd Senior Member

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    This has been done in collaboration with the lead author, Carolyn Wilshire.

    CS
     
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  12. charles shepherd

    charles shepherd Senior Member

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    As I've just mentioned, this was done in collaboration with the lead author of the paper (Carolyn Wilshire) and then through the publisher of the journal

    This is quite a costly thing to do - so it will have to be a very important paper if we are going to consider doing this again

    Crowdfunding would be another option

    But in the case of the PACE trial re-analysis, there are a number of reasons why we felt it was important to get the full paper into the public domain as soon as possible

    As was discussed at the meeting at the House of Lords last week with the Countess of Mar, we can now send the full paper to NICE in relation to their review of published evidence with a view to reviewing the NICE guideline on ME/CFS later in the year

    Hopefully, this will have some effect!
     
  13. Barry53

    Barry53 Senior Member

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    This action feels like a really important statement/landmark in its own right.
     
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  14. charles shepherd

    charles shepherd Senior Member

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  15. daisybell

    daisybell Senior Member

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    My initial impression from looking at this abstract is that cost-savings due to treatment can probably be entirely explained by the fact that no poor bugger who went through the treatment wanted to go back to the doctor for anything ever again- hence the reduction in healthcare-costs.

    Of course, if you're the NHS, this is a win....

    Leaving this aside, thank you very much to the MEA and to Dr Wiltshire for the open access!
     
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  16. TiredSam

    TiredSam The wise nematode hibernates

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    That's the second time in 2 days I've seen ME/CFS openly called a functional somatic syndrome. Per Fink and Michael Sharpe. They really are going all out for it now, ignoring WHO categorisations and the downfall of PACE. The main problem it seems to me is that they are completely unaccountable and can carry on doing whatever they want regardless of what is going on in ME research elsewhere.
     
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  17. Barry53

    Barry53 Senior Member

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    That seems the crux of the problem.
     
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  18. A.B.

    A.B. Senior Member

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    Democratic deficit in medicine, research, health care. People who in theory should be served by these systems end up being oppressed by them.
     
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  19. Sean

    Sean Senior Member

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    Thank you MEA. :thumbsup:

    A donation will find its way to you shortly to help with the cost. :moneybag:

    -----------------------------

    Plus Wessely dragging out his 'harassment and deaths threats' routine for yet another dreary turgid recital.

    The stark appalling truth is that they could not get away with this ruthless brutal fraud, and have done so for decades, without very high level sustained political protection, from both the medical establishment and various governments.

    This intellectual and moral corruption goes all the way to the heart of governance.
     
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  20. user9876

    user9876 Senior Member

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    I suspect Wessely's routine is part of his behind the scenes lobbying to keep others in the british medical establishment from looking at and criticizing PACE. Careers should be ended with the way they have spun results, lied to patients and the NHS, and stigmatized patients.

    Having lost the intellectual case behind the PACE results (and I think knowing they would if data was released) they are now going for MUS as an alternative relabeling to confuse and buy themselves time.
     
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