A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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NY Health Commissioner sent letter to every physician in the state about myalgic encephalomyelitis

Discussion in 'General ME/CFS Discussion' started by Jennifer J, May 29, 2017.

  1. Jennifer J

    Jennifer J Senior Member

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    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:

    An excited member just emailed me about this! It's too good to not share right away.

    I don't know the details, Terri Wilder posted it on Twitter and she'll be sharing more (see below) and Tom Kindlon retweeted (if I understand this right).

    Thank you Commissioner Zucker :thumbsup: :thumbsup: and everyone who made this happen!

    (Excuse the double, one ought to be more easily readable than the other, I can't figure out how to do this better right now.)

    Enjoy! :)

    ny commissioner.JPG



    Edit 6/1/17. This is from part of #11 post:

    You can download a PDF of the New York Department of Health letter here (thank you @Laurie P :)):

    https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view
     
    Last edited: Jun 1, 2017
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  2. Hutan

    Hutan Kina solidarity

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    Wow, what a great letter from, I presume, a very influential person.

    So much to like in this letter.

    Thank you to all involved.
     
    Sancar, mango, Binkie4 and 10 others like this.
  3. Comet

    Comet I'm Not Imaginary

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    What a great letter! Thanks so much Terri Wilder and Commissioner Zucker! I will be taking a copy to my NY doc appt which should be in the next month or so. :)

    Big thanks to everyone involved in accomplishing this. :angel:

    @Hutan, that was one of my favorite lines too. :thumbsup:
     
    Mary, dangermouse, belize44 and 7 others like this.
  4. suseq

    suseq

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    Wow was my first thought too! Hope this enlightened awareness spreads. With thanks to all involved.
     
    Mary, dangermouse, belize44 and 4 others like this.
  5. belize44

    belize44 Senior Member

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    This is truly exciting - a physician who is actually advocating for us! :thumbsup:
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Brilliant.

    Want to thank HZ on twitter? Handle: @HealthNYGov
    Or generic email (don't know if there is a better connection): https://www.health.ny.gov/
     
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  7. dangermouse

    dangermouse Senior Member

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    Brilliant :thumbsup:
     
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  8. Jennifer J

    Jennifer J Senior Member

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    Yesterday and today I went to watch Jen's talk on TED Talks. Each time I've tried to watch it, the visual freezes at some point while she continues speaking. I'm concerned about this because of the letter the Commissioner sent to all the NY doctors. In the letter he writes to learn more about ME/CFS from the patient perspective, consider watching Jen's Ted Talk... It would be good to have all the visuals in Jen's talk if they decide to watch it and for anyone watching.

    Can anyone check this out and see if this is happening for you, too? Thank you.

    https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
     
  9. Old Bones

    Old Bones GOING, going . . .

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    @Jennifer J As requested, I just watched Jen's TED talk via the link you provided. It worked perfectly all the way to the end -- both visuals and sound.
     
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  10. Jennifer J

    Jennifer J Senior Member

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    Yay! Good to hear. One less thing to try to straighten out. Thank you, @Old Bones! :) :hug:
     
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  11. Jennifer J

    Jennifer J Senior Member

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    @Laurie P, thank you for this! :)

    You can download a PDF of the New York Department of Health letter here:

    https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view


    This is so good to hear Binkie4! :thumbsup: (@Binkie4 wrote the below in another thread before Laurie posted the above download.)

    Yes, let's share wherever we can these things and keep the momentum going.

    Let's work too to get all states and countries to do what the Commissioner of NY did and the chair of the Northern Ireland Health and Social Care board (http://forums.phoenixrising.me/inde...-all-gps-re-physiological-nature-of-me.51873/).

    Good work everyone who put in time, much effort, and many for years, to make these things possible! Thank you!!! :hug:
     
    Last edited: Jun 1, 2017
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  12. Forbin

    Forbin Senior Member

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    Not to be picky, but, in the first paragraph, ME/CFS is called a "rare disorder."
    Later, the letter says...
    Apparently, in the US, a disorder is classified as "rare" when it affects fewer than 200,000 Americans.
    https://www.rarediseaseday.org/article/what-is-a-rare-disease.

    By that metric, ME/CFS doesn't qualify as "rare," even when the conservative estimate of one million is used (which I'm pretty certain is an estimate of the number of adults with the disease).
     
    Last edited: Jun 1, 2017
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  13. Alvin2

    Alvin2 If humans were rational...

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    Your correct but perhaps two wrongs make a right, by saying rare when docs see it they are more likely to say oh thats rare disease we got the memo about instead of yeah right this common disease that appeared overnight.
     
  14. Forbin

    Forbin Senior Member

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    I did wonder if it might have been a way of softening the introduction of ME/CFS by saying, "Hey, it's not your fault you've never heard of it. It's rare."

    I guess I mention this because when I gave my doctor the SEID overview, he scanned it and blurted out, "A million people!? That's a lot!" I think he'd been under the impression that it was a very rare condition of maybe 20,000 people.
     
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  15. Alvin2

    Alvin2 If humans were rational...

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    Indeed, though when i mention it i try not to go into more detail then necessary, doctors can be extremely intransigent
     
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  16. Webdog

    Webdog Nothing left to say

    @Jennifer J I showed this letter to my Kaiser Permanente primary care doc, and he said he showed it around to his fellow doctors.

    Slowly perceptions are changing.
     
  17. Jennifer J

    Jennifer J Senior Member

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    @Webdog, this is encouraging good news! Made my day to hear this and think about it. That's great that you shared it with your doctor, he's receptive and is going to show it to his fellow doctors. :thumbsup:
     
    Last edited: Jun 15, 2017
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  18. Anne

    Anne Senior Member

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    Question: Is the New York Health Commissioner the head of New York State Department of Health?

    I'm including a news piece on this in my Swedish ME newsletter, which reaches 2600 professionals, and I'd like to know how best to word it. If the Commissioner also is the head of the department, I'll put that in.

    Grateful for help.

    @medfeb
     
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  19. medfeb

    medfeb Senior Member

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    Yes, he is
     
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