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PLOS ONE pulls highly cited mindfulness paper over undeclared ties, other concerns

Discussion in 'Health News and Research unrelated to ME/CFS' started by Londinium, Apr 17, 2019 at 11:24 AM.

  1. Londinium

    Londinium Senior Member (Voting Rights)

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    https://retractionwatch.com/2019/04...ss-paper-over-undeclared-ties-other-concerns/

    Chalk another one up for James Coyne. I'm in two minds about Professor Coyne: his abrasive approach is quite often detrimental, in my view, especially for a patient community that is already seen as militant/abusive. That said, you cannot overlook his successes...
     
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  2. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Why can't Cochrane do like this?
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. Trish

    Trish Moderator Staff Member

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    PACE gets a mention too:
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Would creating a company with the intent of promoting a treatment model be a financial conflict of interest? Advising medical insurers to reject disability claims based on one's own research? Abusing a position of influence in a charity for personal benefit in promoting a treatment model that failed in trial after trial?

    Asking for 20 million friends.
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    When a paper like this gets retracted, what exactly happens with other papers that cited it?
     
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    I disagree, the bullies/reality deniers use everything from abrasiveness to threats to lies. And when a victim speaks up they are the ones accused of being abrasive, bullies or liars. It is meant to keep the victims downtrodden, so while we should not become their evil and use threats or lies i have no problem with being abrasive, outspoken or determined to right wrongs.
    Non bullies being meek is a culturally enforced behaviour that is meant to protect the status quo and bullies.
     
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  8. Londinium

    Londinium Senior Member (Voting Rights)

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    Personally I consider the first of those adjectives to be very different from the second and third (which I totally 100% support). The trouble is, whilst I think the ME/CFS community absolutely has the right to be angry, that is not the same as it being tactically effective.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I can think of lots of times when patients expressing anger has been used to hurt them, led to them being dismissed, or being used against all patients. I can't think of a single time it has been helpful.
     
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  10. Alvin

    Alvin Senior Member (Voting Rights)

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    When your fighting a powerful and intractable enemy everything you do must be tactically chosen.

    When people protest injsutice being meek gets them nowhere.
    We should not become the evil we oppose but being meek will mean we fail.

    I get it, it feels intuitive to go with culturally sanctioned norms and ways of doing things.
     
    Last edited: Apr 22, 2019 at 6:05 AM
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    I wouldn't describe Kindlon's approach as 'meek', but his carefully researched, calm and measured advocacy efforts seem to have been useful. I think that is the sort of approach that people like Wessely are really concerned about as it's very difficult for other people to dismiss as 'angry activists'. That judgement is not based on culturally sanctioned norms, but on what I have seen happen over the last twenty years.
     
    Last edited: Apr 22, 2019 at 1:22 PM
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I’m sure I’ve said this before but in a movement for change you need mainstream people and more radical people. Change comes as a result of a combination of both. The demands of radical people make the mainstream approach look like a better option to those resisting change.
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    In some ways I agree, but I think that there are unusual difficulties around ME that make that sort of dynamic eve more difficult to pull off than it has been in other circumstances. I think that we need to be 'radical' in our aims, but also cautious and restrained in our methods.

    There's an unusually high cost to certain sorts of 'radicalism' for us.

    egs of why I think it's hard for us to adopt strategies that have been useful for other groups:

    - We really have very little power. We don't have a load of health people happy to cause trouble and disrupt those who are trying to ignore reasonable concerns.

    - We're really actively working against the interests of a lot of the people who have power over us. Also, if we win on an issue like PACE is is going to be humiliating for entire institutions and systems. There's no real way of making progress with a compromise on a lot of these issues and there best tactic is to try to smear all their critics as radical and unreasonable.

    - What we're doing is weird and unusual - a patient led movement pointing out that the 'experts' in a field of science have been doing poor quality work that exaggerates the benefits of supposed treatments is not the usual way of doing things. More often it's patients desperate for 'hope' being told 'no real evidence' by rigorous scientists.

    - The fact that CBT and GET are often viewed as 'psychological' therapies means that any criticism of CBT/GET research can be presented as driven by an ideologically driven opposition to a psychological understanding of ME by those who hold stigmatising views about mental health problems.

    - Also, ME being viewed as a mental health problem serves to help justify stigmatising views of patients critical of work like PACE.

    - The 'angry, unreasonable activists' meme is popular amongst a lot of people and they feel able to justify dismissing patient concern by just using rare examples of people crossing the line.

    - and so on, and so on...

    It seems that for a lot of the people with power, criticising PACE/Wessely/etc is 'radical'. To speak honestly of the problems around ME/CFS is to be outside of the 'mainstream' in an important sense, and that makes it very difficult to get the 'good cop/bad cop' dynamic that is a part of a lot of advocacy efforts.

    This is all very irritating. For me personally, I hate being polite, especially by the appalling standards of the UK Establishment. But at the same time, I've seen how almost any sort of 'rudeness' is used against us. The fact that people who've been so badly mistreated are expected to be consistently polite in their criticisms of those who've behaved badly is shameful - but again, if we want to make progress I think that we need to make our criticisms of even that in a restrained and polite manner.

    PS: I'm still half asleep.
     
    Last edited: Apr 22, 2019 at 4:29 PM
  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think this is hard to gauge from past efforts. In the past it was more individual efforts and no one was been heard very well. That goes for either Tom Kindlon and his style or more strident actions of others. 20 years ago no-one gained any traction.

    I think the difference now is the coalescence of people working together supporting the people who are able to do the big work of writing and responding to all the nonsense. I don't think it was ever necessarily about the tone that made the difference. It's only been a few short years that we've seen real movement. And there are other reasons to point to as well as what I said above--the inclusion of serious medical researchers, David Tuller's blog, freedom of info requests granted.

    Abrasiveness can be in the eye of the beholder as we well know from M Sharpe's communication. He takes umbrage at almost everything we say. It's true that any more forward in your face approach needs to be careful about the facts but just because it's called out with nasty name calling shouldn't be a reason to be quiet IMO.
     

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