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"NIH to patients, 'We are your partners'" by Simon McGrath

Discussion in 'General ME/CFS News' started by Dolphin, Mar 24, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. aaron_c

    aaron_c Senior Member

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    As the Russians say: Trust, but Verify.
     
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  3. Snow Leopard

    Snow Leopard Hibernating

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    Well said!
     
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  4. Forbin

    Forbin Senior Member

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    Well said, indeed!

    Russian: "Доверяй, но проверяй"

    English: "Doveryai, no proveryai"

    Pronounced: "Doh-vee-eye, no pro-vee-eye" (at least by Ronald Reagan)

    [Actual Russian pronunciation sounds more to me like "Doh-vee-Ray, no pro-vee-Ray" with a sort of soft "ch" sound swallowed at the end of both uses of "Ray."]

    [Considered an old Russian proverb or maxim.]
     
    Last edited: Mar 26, 2016
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  5. Sasha

    Sasha Fine, thank you

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    Great article, @Simon - and some very interesting comments on it at #MEAction.
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Simon and Chrisb like this.
  7. duncan

    duncan Senior Member

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    We are not their partners.
     
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  8. jamie

    jamie

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    He also highlighted the key role patients who take part in the study will play, saying the history of medicine shows how doctors can learn from patients.

    So who do the patients in the study interact with that will make such a difference? Who is the coordinator or go between with the patients and the higher ups? The "expert" clinicians? I don't see Collins or Koroshetz having chats with them about how they feel after the excersize test. My guess is that Walitt and his friends will be the ones to both interact with and ask patients questions, chose the patients and they will relay what they chose to to their bosses.

    And I love how they said they are listening and this call is proof as they put up their study specifics on line just as the call started so they knew nothing said during that call would change anything and give us no time to read it and respond.

    If they had any input from patient groups as they said they did in creating this study nobody would have let those controls happen or the reeves criteria or the selecting of patients left to unqualified people. So I think they were lying about that or exaggerating broad discussions as real input.

    That call was theater because they did not allow for any followup questions. "I'm not biased" now that's settled next question

    Simon, this rant isn't directed at your article, just reading what they say vs what they've done gets me all wound up.
     
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  9. Simon

    Simon

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    NIH to patients, “We are your partners”
    full blog

    Lots of interesting commments, inc this one from @Jonathan Edwards on bias (and I agree)

    A couple of comments on why the NIH hasn't invited patients to take part as partners, from people who work/have worked in US govt, are interesting about the practicalities of that (and wow, what a lot of bureaucracy).
     
  10. duncan

    duncan Senior Member

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    So they didn't mean the bit about being our partners? Then why say it?

    I suppose saying nice stuff has its place.

    It might be hard to feel the love, though, if someone is stiff-arming you while sweet-talking.

    What might be better? Removing that psych gateway to the study. Reducing the controls to one by eliminating the Lyme control. Not allowing any clinician to populate the study if they regularly endorse GET to their ME/CFS patients.
     
    Last edited: Mar 25, 2016
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  11. Sasha

    Sasha Fine, thank you

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    I think they're saying they want to be our partners but that federal regulations prevent them from consulting patients before a study design has been put forward - if I've understood this correctly. That is, we can only contribute in the dark before this point - and only fully once an initial design has been put forward, at which point we can start partnering.

    This is unsatisfactory but if there are issues that can be worked out there, it's well worth doing it for future studies.

    For now, we're in the position of having been invited to be partners at this point in time, so we can use that to try to fix problems with this proposed design. We need to move forward on this, and we certainly shouldn't be recommending that they ditch it all and start again, IMO: its 80% there.
     
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  12. Sasha

    Sasha Fine, thank you

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  13. duncan

    duncan Senior Member

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    It could be 99% there, but if the 1% remaining happens to have teeth and venom, it still could be dangerous.

    Again, most would prefer they simply fix this stinker, not trash it totally. But I don't see them fixing much after the FMD correction.
     
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  14. jimells

    jimells Senior Member

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    Because it is what the "communications" people tell them to say.
     
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  15. jimells

    jimells Senior Member

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    It's like accepting a ride on the back of a crocodile who promises not to eat his passenger.
     
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  16. jimells

    jimells Senior Member

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    Tell that to Jeanette Burmeister, Dr Collins. She has a $140,000 legal bill created by HHS intransigence, hostility, and perjury, just because she filed a FOIA request. They did finally pay up, as ordered by the federal judge, but Jeanette received no compensation for the many personal hours she spent on the litigation, and certainly received no compensation for the damage to her health caused by these "partners".

    http://thoughtsaboutme.com/2015/09/...unrelenting-and-unrepentant-legal-violations/
    If Dr Collins really wants to be "partners" he could start by apologizing to Ms. Burmeister and implementing the CFSAC recommendations. All the NIH blah-blah about "we don't know how to communicate with patients, and besides, it's too complicated" is bullshit, pure and simple.

    There is already a two-way communication mechanism - it's called the "Chronic Fatigue Syndrome Advisory Committee". It's only been around since 2003. Perhaps someone should tell Dr Collins about it.
     
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  17. alex3619

    alex3619 Senior Member

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    What ever happened to the investigation into the claim that CFSAC reports were being altered between being approved and being delivered to NIH?
     
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  18. cmt12

    cmt12 Senior Member

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    As it currently relates to ME/CFS, patient input is only minimally beneficial. Patients tend to be right about what's wrong, but wrong about what's right.
     
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  19. jimells

    jimells Senior Member

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    Good question. I can't even remember if it was Jeanette Burmeister or Jennie Spotila who worked on that issue. I'll have to search their websites to see.
     
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  20. Asa

    Asa Senior Member

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    jimells likes this.

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