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Jennie Spotila blogpost: NIH Attitudes Affect Policy: A Story In Two Parts

Discussion in 'General ME/CFS News' started by Kati, Jun 27, 2017.

  1. Kati

    Kati Patient in training

    This is a very interesting post backed by freedom of information requests. Here is the introduction:

    Much more at the link:

    Disclosure: I am mad as hell that all of us are still in limbo. We have a right to be angry. There is a need for reconciliation.
  2. Luther Blissett

    Luther Blissett Senior Member

    Yorkshire, England
    A good post highlighting the difference between viewing 'patients' as an abstract mass, (note our complaints are always suspected to be organised by some hidden central focus. We are viewed as unable to have initiative or the will to act unless prodded and manipulated.) and 'patients' as real people.

    Edited for spelling
    Last edited: Jun 27, 2017
    SamanthaJ, JaimeS, Comet and 2 others like this.
  3. daisybell

    daisybell Senior Member

    New Zealand
    This is a great blog post. I hope Collins and Koroshetz read it and actually engage in some critical self-reflection.
    anniekim, Susanna D, mango and 4 others like this.
  4. Comet

    Comet I'm Not Imaginary

  5. Kati

    Kati Patient in training

    I hope they read it too and I hope they are not mad that patients ask for freedom of information act documents, namely emails. We are well beyond trust, for our community. We live in an era where some so-called scientists (psych lobby) still try to pull their way and prevent real research from happening. Stakes are high. There is still no approved drugs, still very few money for research, no multi-center clinical trials, and no medical specialty.

    Patients have a right to wonder if the research will be done right (right case definition, right cohort, right tests, right conclusons) and whether NIH is being influenced by someone like Edward Shorter.

    The best way forward is to invite patients at the table, and establish trust. Ensure the maximum transparency possible and engage in a dialogue that will move us forward.
  6. Valentijn

    Valentijn Senior Member

    Unfortunately Collins responded by basically backing up Dr. Koroshetz, albeit in much milder terms. Maybe he was placating Dr. Koroshetz in the midst of his little temper tantrum? I'd be curious to know if Solve ME/CFS got the promised reprimand from Collins.

    However that was in November of 2016, and Dr. Koroshetz made some very positive statements in early June 2017, which the blog also covers - such as funding needing to increase twenty-fold, history of patients being ignored, needing to rebuild trust, etc. I don't agree with the blog's criticisms of these statements at all. But I wouldn't be surprised Dr. Koroshetz's improved attitude was inspired by knowledge of the FOIA request which obtained his inappropriate earlier comments, and merely demonstrates a preemptive attempt to repair the damage those statements are now causing.
    Last edited: Jun 28, 2017
  7. TiredSam

    TiredSam The wise nematode hibernates

    From the Dr Collins quote:

    I have recently developed a nervous twitch whenever I see the word "collaborative".
    Missense, Webdog, Jennifer J and 7 others like this.
  8. dreampop

    dreampop Senior Member

    Yeah, basically I'm of the opinion that it's just plain discrimination. No drama, it's just what it is. Stereotype of a minority + government impact of that stereotype. My optimistic opinion was that Collins + Koroshetz were above it and wanted to move things along without stirring the pot. Collins, in particular. These comments, which are behind closed doors anyway, suggest that is not the case. Really, their official response to Shorter signaled it, but this is pretty blatant.

    How can you say in the same breath "you're not receiving enough funding, but you can't be agitory at all". That is a statement that comes from a deep held discrimination. Your not being treated equally, but you can't seem upset. Funding could be for naught - then he ends with a veiled threat. The confusion is being treated equally in America is not a favor, it is a right. But it's only a right if you fight for it.

    I mean, what researchers even know/care that Shorter gave a private talk at the NIH and the ME/CFS sent a few e-mails saying that's not o.k.? Koroshetz can't back up that statement at all. It's so absurd. "I won't submit my grant to study ME/CFS because patients sent e-mails saying Ed Shorter shouldn't be giving a history of CFS"... How would they even know a few e-mails were sent out? And its funny, because as far as I call tell, in 1997 when funding started decreasing in absolute dollars, PR wasn't around, Twitter wasn't around, I find it hard to believe "difficult patients" were the problem then.

    And it fits - it fits with what the British tribunal said, Nath's contradiction, that BS about being harassed. It's a narrative, a good one, a convincing one and a scary one (because you don't want to lose what little you have), but it's not one based in the facts. A lot of props to Spotila, because it's really important to build as a complete record of the NIH's private thought process even when any given FOIA or whatever doesn't blow up.
    Last edited: Jun 30, 2017
    SamanthaJ, Hutan, anniekim and 5 others like this.
  9. ahimsa

    ahimsa Rarely on PR now

    Bumping this thread. Jennie's blog post on NIH is well worth reading!
    Jennifer J, Comet, mango and 2 others like this.

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