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David Tuller: Trial By Error: Three Years On...

Discussion in 'General ME/CFS News' started by Kalliope, Oct 28, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Trial By Error: Three Years On...

    Three years ago this month, Virology Blog published my 15,000-word investigation of the PACE trial, so this seems like a good time for a bit of reflection. I certainly didn’t expect this saga to drag on this long. I’ve kept at it mainly because of the UK academic and medical establishment’s unwillingness to acknowledge what’s gone wrong, its failure to provide reasonable responses to substantive criticism, and its persistence in defending indefensible studies.
     
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Thank you @dave30th - excellent summary and I'm so glad that you're helping us. You've been extremely effective!
     
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  3. Trish

    Trish Moderator Staff Member

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    Thank you so much @dave30th for all your efforts on our behalf. Or perhaps I should say, on behalf of good science. It's scandalous that your efforts are still needed, or needed at all.

    Decent doctors and scientists looking at the PACE and FINE trials would conclude that there is NO evidence that GET or CBT have any beneficial effect on patients with any form of chronic fatigue, let alone on people with ME/CFS.

    Given the latest depressing news about the NICE guideline group appointments and Cochrane's apparent backtracking, we need you more than ever.
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    Really good @dave30th. The fact that this is still happening 3 years on is an appalling indictment of the UK science establishment. One day it may become a Hollywood blockbuster akin to "All the President's Men". I wonder who would play you? :).

    Just so you know, there is a minor typo ...

    "long-tine friend" instead of "long-time friend".
     
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  5. Stewart

    Stewart Senior Member (Voting Rights)

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    Asked and answered. :)

     
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  6. Sean

    Sean Senior Member (Voting Rights)

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  7. Barry

    Barry Senior Member (Voting Rights)

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    Aah ... that's a bit Freudian :unsure::oops::)
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    I said this before Idris is a great bloke and Brit but Denzel all the way for me and he’s got a good CV for it - Philadelphia and The Pelican Brief
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    It shouldn't take this long!
     
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  10. Barry

    Barry Senior Member (Voting Rights)

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    What ... the film? :rolleyes::whistle::)
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    The psychiatrist has no clothes?
     
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  12. chrisb

    chrisb Senior Member (Voting Rights)

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    Please. Haven't we suffered enough.
     
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  13. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Thanks @dave30th
    I just hope there’s light at the end of the tunnel - soon. The current NICE appointment situation has knocked me for six! Someone will just not let go - it sucks. xx
     
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  14. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Thank you @dave30th for your persistence....anybody thinking your work was a COI is off their rocker as far as I’m concerned
     
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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Thank you @dave30th for having worked so much harder and so much longer than you I initially anticipated on this brief.

    You definitely have helped push ajar the door to change, though hopefully the recent developments at Cochrane and NICE do not mean we are about to have it slammed our faces again.
     
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  16. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you, David for all you have done, and continue to do!

    As you say, if you make a mistake, you apologize and correct it. Others in many fields do the same. However, some do not.

    The PACE trial is a major mistake from top to bottom. So is the Oxford criteria. But, no apologies there. And why not? Follow the money, and power.

    With all you and others have done to point out the flaws in this and other similar trials, I wonder if governments are starting to think about getting refunds. Tax payers' money tossed into the garbage!
     
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  17. Peter

    Peter Senior Member (Voting Rights)

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    Thank you @dave30th for all the great efforts and important work. You’ve done a h... of a job.

    It is very worrying that it has to be like this. Scary thinking if no one from “outside” did it. As patients and individuals we are disqualified from bringing anything of value to the table. Not to forget the “terrible” organizations and people speaking on behalf of them.

    We do need a lot of people from outside the community to speak up and fight for patients, when medicine itself have failed so monumental. Where are the reasonable people that should stand up for science, question pseudoscience and consisting truths, work in favor of science and patients? Obvious simple questions should be: what are the results, human and economical costs after no funding and decades of this? Have we achieved anything? More of this or time to fund and try to get knowledge, treatments options, recovery/much better, finally get patients back to work, to earn money and pay taxes.

    It is a devastating situation, when “vexatious” from the self-appointed so-called experts gets all kind of medical bodies to stick head in sand. Says a lot of how deeply rooted. Says everything when having no arguments, insinuating that Cochrane is giving in for pressure from patients. Like there is no substantial concerns even worth looking into.

    I think we all know that science in the end will take care of pseudoscience and horrendous mistreatment of patients. But it’s just sad thinking of all time passed by and the total neglect. It is hard to describe consequences in words.
     
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  18. Nellie

    Nellie Senior Member (Voting Rights)

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  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you, @dave30th for another great article and for your professional dedication.

    With regard to Cochrane:

    Have there been significant media accounts oher than the Reuters piece?

    It seems to me a relevant detail that most media didn't buy the story in the version told by a Reuters journalist known for her biased reporting. Or have I missed something?

    (However, other journalists appear not to have been interested to investigate this matter properly either.)

    Edit: I am brain fogged and am to withdraw myself from the forum temporarily until my PEM will have been adequately dealt with. So, aplologies for not remembering at the moment: Which papers/ other media actually did buy the Reuters "report"?
     
    Last edited: Oct 29, 2018
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  20. Trish

    Trish Moderator Staff Member

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    I guess most journalists seeing the Reuter's article will do a quick google for the Cochrane review and find it's still there and assume there is no story.
     
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