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2019 Ann W. Caldwell Lecture on ME at MGH Institute of Health Professions

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Dec 31, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Learn About the Millions Missing from ME/CFS – Sundance Award-Winning Film Screening and Panel Discussion
    January 15, 2019 5:30 PM - 7:00 PM

    Boston
    https://www.massbio.org/events/lear...ning-film-screening-and-panel-discussion-3244

    eta: same event
    https://bouve.northeastern.edu/even...-compassionate-care-for-a-person-with-me-cfs/
    eta2: same event
    https://www.massmecfs.org/images/MGH-IHP_INVITATION.pdf
     
    Last edited: Dec 31, 2018
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  2. JaimeS

    JaimeS Senior Member (Voting Rights)

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    I believe Rivka has been organizing this. She's an absolute powerhouse.

    Ron Thompkins was at the last Stanford symposium. It should be interesting to hear what he has to say.

    If you live in the Boston area, please encourage clinicians in your area to attend.
     
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  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yes, @JaimeS, Rivka is great at this, and so much more! We have many talented wonderful people moving knowledge and awareness along.
     
  4. John Mac

    John Mac Senior Member (Voting Rights)

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    Merged thread

    Boston, MA — On Tuesday, January 15, the MGH Institute of Health
    Professions hosts an event for over 600 healthcare professionals,
    researchers and graduate students, and the public, to learn about the
    highly disabling disease ME/CFS (Myalgic Encephalomyelitis/Chronic
    Fatigue Syndrome). The program will be held at 342 Huntington Ave,
    Boston, MA, in Northeastern University’s Blackman Auditorium, at
    5:30-7 pm (doors open 5 pm). Pre-registration not required.

    https://hhv6.blogspot.com/2019/01/the-mgh-health-professionals-at-chronic.html
     
    Last edited by a moderator: Jan 16, 2019
  5. andypants

    andypants Senior Member (Voting Rights)

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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Credit where it's due: quite a bit of this is Rivka's work.

    [Edit: LOL threads were merged, so now it seems as though I am reminding the community:

    RIVKA.

    And BTW, all the Massachusetts team -- it takes a village for a project on this scale. Well done, everyone!]
     
    Last edited: Jan 17, 2019
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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  9. Andy

    Andy Committee Member & Outreach

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    Merged Thread

    'Students Hear of Little-Known Illness'

    https://www.mghihp.edu/students-hear-little-known-illness
     
    Last edited by a moderator: Jan 25, 2019
  10. Andy

    Andy Committee Member & Outreach

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  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    There was IMO an unfortunate thank you from a Lisa Nagy MD who thinks we'll all recover (treatments are available) given the tools to do so. She must think that all PwME have a very mild version of it. Which means she doesn't really know very much at all. Dangerous.
     
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  12. ahimsa

    ahimsa Senior Member (Voting Rights)

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    It's not really a thank you, it's an advertisement for her business. It even includes her website. Pretty shady if you ask me.
     
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  13. ahimsa

    ahimsa Senior Member (Voting Rights)

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  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I didn't notice that somehow. I don't think Rivka S is on S4ME. Does anyone know how to contact her? I think if advertising for something like that is the purpose it should be removed.

    Although in the scheme of things I recognise it's not a huge issue.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Have just watched this; for anyone interested the Q&A session starts around 30mins in.
    Also occurred to me that it might be worth someone making a note of the questions asked at these (and other) sessions with medical professionals to add to any guidance for healthcare professionals produced.

    @JaimeS
     
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  17. JaimeS

    JaimeS Senior Member (Voting Rights)

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    That's a good idea... my plate is really full but I will pass this idea on.
     
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  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Should be required watching for whoever wrote the crappy Harvard material
     
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  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    I did -- apparently it's already in the works, though with the bulk of Q&A it may take awhile to transcribe!
     
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