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Tell WHO to demand publication of all clinical trials

Discussion in 'Petitions' started by MeSci, Nov 12, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    This petition is not very well drafted as it fails to mention the need to anonymise data, and also appears to naively assume that research publication automatically leads to changes in clinical practice, but still worth signing, I think.
    Petition wording:
    The petition is here.
     
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  2. Sasha

    Sasha Fine, thank you

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    Done! Thanks for posting.
     
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  3. CantThink

    CantThink Senior Member

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    Done :)
     
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  4. barbc56

    barbc56 Senior Member

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    Thanks @MeSci !

    You can also give your imput directly to WHO.

    http://www.who.int/ictrp/results/en/

    Another petition from AllTRIALS.
    http://www.alltrials.net/petition/

    Countering the myth that transparency means personal data will be released.

    http://www.alltrials.net/find-out-more/faq/

    The Alltrials web site includes important information about this topic including how people can get involved in the campaign whether on a personal or group basis..
    http://www.alltrials.net

    Barb
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Yes - I think I must have signed up to something with AllTrials as I get emails from them. I obviously support their demands for transparency, but I seem to recall that they have/had some questionable connections. I can't remember what these were/are though.

    So I look carefully at their emails, petitions, etc., before putting my name to anything. I think I've taken a few actions recommended by them.
     
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  6. barbc56

    barbc56 Senior Member

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    That would probably be Ben Goldacre a British Psychiatrist and Skeptic. He is one of the founders of AllTrials.

    I find him credible as well as as other organizations affiliated with AllTrials.Some do not share his views because he's against a lot of alternative treatments.

    He just wrote a book called Bad Pharma which surprised many of his critics as they have often called him a Big Pharma shill.:lol:

    Barb
     
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  7. biophile

    biophile Places I'd rather be.

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    I wonder if his next book will be "Bad Psychs", which would surprise his critics who suspect that so-called Wessely school CBT/GET are all off-limits to Goldacre's brand of skepticism? What would actually surprise me is a book on "Bad Placebo", as Goldacre appears to abandon skepticism in his uncritical belief and hyping of the wonders of the placebo effect.
     
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  8. user9876

    user9876 Senior Member

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    I wonder if rather than the psychs being off limits to Goldacre its actually the wider medical community. Its easy to blame big business for all the wrongs going on in the medical world rather than looking at how doctors behave. Those promoting CBT don't have a big pharma organization to hide behind and its not just ME look at the debates around CBT for psychosis where NICE push CBT despite trials showing it is ineffective and the SMC spin papers supporting CBT. But in the case of big pharma promoting their drugs giving freebees to doctors the doctors are taking these but the criticism is on pharma for doing this. My concern about Goldacre is that he thinks the medical world have it right and others (alternative medicine and big pharma) are trying to corrupt their science. But he doesn't look at the basic medical methodologies and the failings there or the 'conventional wisdom' that has build up over time with the medical profession that had be actual evidence base. I worry that he promotes a science that I see as black box testing with a cookbook of statistical methods as science rather than a search an understanding of mechanisms and reasoning from basic principles of how biological systems work.
     
  9. barbc56

    barbc56 Senior Member

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    @biophile @user9876

    Other than that, do you plan to sign the petition or do you believe that because Ben Goldacre also believes in complete transparency we shouldn't sign either one? This could sabotage an issue that's important to our community.

    While there may be times that who endorses something swaying my decision, in this case, I have signed this independently of who endorses it.

    I would think there are people who signed who are considered as speaking for our community whom I would disagree with on most other issues.

    So back to the topic of this thread?

    Barb
     
    Last edited: Nov 13, 2014
  10. user9876

    user9876 Senior Member

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    I have no problems signing such a petition and as I am a big believer in transparency and I agree it doesn't matter who else supports it. However, I think it is important to understand that whilst publication of trial results is necessary it is not sufficient to gain a good understanding of the research. This is particularly true where summary stats are used. But also protocols can be designed so that they get the desired result.
     
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