A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Renewing pressure on the Lancet

Discussion in 'Action Alerts and Advocacy' started by Cheesus, Jan 18, 2017.

  1. Cheesus

    Cheesus Senior Member

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    To recap on the saga of the Lancet, for those not in the loop:

    There was a fantastic open letter to the Lancet that outlined a number of flaws with the PACE trial. The letter was signed by various esteemed names in science and medicine. However the editor of the Lancet, Dr Richard Horton, did not willingly reply to the concerns outlined by the signatories.

    Eventually enough pressure was applied that Dr Horton commissioned a letter from the signatories to again outline the criticisms of PACE, which he said would be published in the Lancet. Despite having commissioned the letter, the Lancet then went on to ghost the authors: rejecting their letter without informing them of this decision.

    An explanation was finally extracted for this action:

    I've never heard of the authors of a discredited piece of work being consulted on whether or not criticisms of that work should be published. Nevertheless, onwards we must forge.

    We now have the data that can add something "substantially new" to the discussion, as per the request of the Lancet. That data has been analysed by two recent publications [1] [2].

    We are fortunate to have two of the esteemed signatories of the earlier letter here on the forum, @Jonathan Edwards and @charles shepherd. I am keen to know what you thoughts are, Prof Edwards and Dr Shepherd, on initiating a new round of pressure on the Lancet via the medium of an open letter, using the recent reanalyses as the basis for a renewed effort?
     
    Last edited: Jan 19, 2017
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  2. charles shepherd

    charles shepherd Senior Member

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    I agree with you that we need to return to The Lancet now that the re-analysis has been published and I'm currently writing a commentary on PACE for a medical journal that will once again call on The Lancet to arrange for an independent re-analyss of the PACE trial data from respected reviewers who have the necessary expertise in statistics and study design

    I can't immediately recall who co-ordinated our open letter to The Lancet but maybe we all need to write again to Richard Horton (editor) - hopefully with some further signatures on the list

    My other thought this morning is to make use of our parliamentary contacts....
     
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  3. Cheesus

    Cheesus Senior Member

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    @charles shepherd

    Good stuff! I believe the author was the venerable Vincent Racaniello. I'm not sure if it was also he who rounded up the signatories.

    I think I may write to my MP about this issue with the Lancet specifically, which I have not done before. Is there a specific group of parliamentarians who I could suggest she speak with? I know the Countess of Mar is our primary advocate in parliament, is there anyone else?
     
  4. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    @charles shepherd, I think the recent published article focuses on the 2013 Psyc Med paper about recovery. It doesn't really talk much about the Lancet paper.

    So you probably don't want to rely too much on that article.
     
    Last edited: Jan 22, 2017
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  5. Sasha

    Sasha Fine, thank you

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    I think there's a huge, pent-up willingness to act among patients in the UK - our problem has always been finding a suitable target and a simple message and people in power who'd be willing to act. Rather than restricting ourselves to using our parliamentary contacts, what about having a campaign in which we write to our MPs? It's simple to explain what's wrong with PACE in The Lancet - criteria for clinical effectiveness that are LOWER THAN THE ENTRY THRESHOLDS!!! - and it's so clearly wrong, wrong, wrong.

    What about coming up with a form letter so that it's quick and easy for PWME to do?

    We have the social-network infrastructure to make a successful campaign possible now, and the ground has been laid over the past year or so, with UK PWME now extremely well-informed about PACE.

    In such a form letter, it would be good to mention the 12,000-signature petition to The Lancet that Horton ignored, and the 29 organisations in 14 countries that demanded that QMUL release the data, as well as the original open letter from all those scientists.
     
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  6. Sasha

    Sasha Fine, thank you

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    Would the MEA come up with a campaign letter, @charles shepherd? We need to be speaking with one voice and asking for the same thing.

    I think PWME will be very willing to write to their MPs, in large numbers.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    Yes, you are quite right - the re-analysis paper relates to data that was published on recovery

    While my commentary will be including some background information on the history of the PACE trial it will be concentrating on the claims relating to recovery

    I will be calling on The Lancet and other journals that have published papers relating to the PACE trial to carry out an independent re-analysis of the results they have published in line with the letter to the editor of The Lancet that I signed along with 30+ other clinicians and academics last year

    And if it is found that they are wrong then any relevant papers will have to be retracted
     
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  8. Cheesus

    Cheesus Senior Member

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    Also many people would feel more comfortable sending a template offered by the MEA, which they could then modify if they wish. A lot of people are not sufficiently familiar with the issues to write the letter themselves, and a lot of people are too sick to go to the effort.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    A letter writing initiative involving MPs is something I need to discuss with MEA trustees and with the Countess of Mar
     
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