Blog: Your silence is killing M.E. by Anil van der Zee

Discussion in 'General ME/CFS news' started by Andy, Jul 29, 2020.

  1. Andy

    Andy Committee Member

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    http://anilvanderzee.com/your-silence-is-killing-m-e/
     
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  2. chrisb

    chrisb Senior Member (Voting Rights)

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    Reassessment of some outbreaks of epidemic neuromyasthenia
    indicated a very high prevalence of
    neurosis in affected individuals. In one of the most
    famous such epidemics, occurring among staff of
    the Royal Free Hospital in London, England in 1955,
    the progression of the outbreak was argued plausibly
    to resemble mass hysteria [27, 28].

    This was what Straus had to say about ME in his 1988 paper. When challenged about this Fauci is supposed to have sided with Straus. What evidence is there that his views on ME changed, and when and where did the change occur?
     
  3. Andy

    Andy Committee Member

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    Who has claimed that his views have changed?

    I'd also highlight to everybody else that Fauci only features in a small part of Anil's blog, which covers quite a lot and is definitely worth reading in its entirety.
     
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  4. Trish

    Trish Moderator Staff Member

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    Brilliant article Anil, @Grigor. That must have taken a huge effort to write. Thank you. I wonder whether it can be published somewhere prominent. @dave30th, any suggestions?
     
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  5. Grigor

    Grigor Senior Member (Voting Rights)

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    @Andy, thank you so much for sharing! Very kind of you!

    @chrisb As Andy said I'm definitely not claiming he changed his mind. I wish! Maybe in due time with all the new developments in regards to covid-19.
     
  6. Grigor

    Grigor Senior Member (Voting Rights)

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    Thank you Trish. It would be lovely although S4ME is of course also quite prominent. :)
     
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  7. shak8

    shak8 Senior Member (Voting Rights)

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    Your English is much better than mine, Anil.

    Impressive and moving post. Important.

    legato e expresivo.
     
  8. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Wow, I'm also impressed by this blog. It's very well written.

    This is a powerful quote:

    "The drive of the ME community to improve science has led to advances that will for sure aid the understanding of conditions like covid-19. Our fight against flawed (social) science will protect covid-19 patients who might go on to develop an ME like illness. We might not have been able to “end” a plague of the disease itself. We might however have ended the plague of how post-viral conditions are being viewed by the scientific and medical world. So in my opinion we’ve absolutely revolutionized medicine in our own right."
    The ending is also impressive:

    For all those health care professionals, scientists, politicians and government agencies who are aware of the hurt and despair that the health-care system is inflicting on us ME patients, why aren’t you more shocked, horrified and angered by all this avoidable suffering? Why aren’t you more vocal in your criticism of your government? Why aren’t you speaking up?!? What on earth are you waiting for?

    The silence is killing M.E.

    Your silence is killing me.

    Silence = death.

    ACT UP NOW!!!
     
    Last edited: Jul 30, 2020
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    I was just trying to make the point, for those who may be less familiar with the background information, that Fauci's professed view that post-covid is highly suggestive of ME should not be taken as offering comfort, unless it can be shown that his views on ME have changed.
     
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  10. Trish

    Trish Moderator Staff Member

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    Yes, that had occurred to me too. He may just think post Covid 'fatigue' is psychosomatic, or at least that it has a strong psychological component and there's nothing much wrong biologically.
     
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  11. Grigor

    Grigor Senior Member (Voting Rights)

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    My own personal view is that I am not sure he'll have the guts to even state that considering so many health care professionals are affected by #LongCovid too.
     
  12. akrasia

    akrasia Established Member (Voting Rights)

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    https://www.statnews.com/2020/07/21/chronic-fatigue-syndrome-keys-understanding-post-covid-syndrome/

    A couple of thoughts:

    Asking for proof of a change of heart by Fauci is futile, particularly at this moment in American life, where he serves as a touchstone for science. Admitting he made an error of judgement of this magnitude is, currently, in no one's interest.

    Doctors, and the medical profession in general, seldom admit mistakes, partly because they adhere to a way of thinking where mistakes and errors of judgement are subsumed into a progress model where everyone everywhere and always is in good faith, even though the path to this new view is often carpeted with human lives. Properly seen it's all been necessary, have to break a few eggs...

    His clumsy attempt to say myalgic encephalomyelitis, as I said in another post, is important, not because he has seen the light, or that he is our friend, or even particularly interested in advancing our interests. It is indicative that the policy at the NIH, finally, has shifted, that it's swimming into view that understanding m.e. is central to understanding what sometimes occurs in the wake of viruses something they've never been interested in.

    My pessimism resides in the fact that you can have a genuine change of view but since money is appropriated based on grant requests research remains stranded in the wake of past and current prejudice. So, while you can see change, at least descriptively, occurring in many places, the influence that represents is still fairly limited.

    Anil, excellent blog,(sorry to derail)
     
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