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NIH: ME/CFS Telebriefing - July 19, 2018

Discussion in 'General ME/CFS News' started by MeSci, Jul 11, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: National Institutes of Health

    Date: July 10, 2018

    URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION

    NIH: ME/CFS Telebriefing - July 19, 2018
    ----------------------------------------

    We request your participation in a telebriefing about updates on NIH's efforts to advance research on ME/CFS. The telebriefing will be held on July 19, 2018, 4:00 until 5:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.

    Dial-in: 866-844-9416

    Participant passcode: 4042892

    If you will be calling from another country, please see the attached chart for your country's access information.

    Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.

    Thank you in advance for your participation and we look forward to an engaging, thoughtful, and productive conversation.

    Regards,
    The Trans-NIH ME/CFS Working Group

    (Don't ask me anything - that's all I received!)
     
    Andy, Webdog, Inara and 8 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Want to add it to the calendar, @MeSci?
     
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  3. Inara

    Inara Senior Member (Voting Rights)

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    Can everybody participate? Is it for listening only or does one have to give some input?

    Oops, I asked a question. :D
     
    MeSci likes this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

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    I suppose so - don't know anything about these events other than what's in the messages!
     
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  5. Webdog

    Webdog Senior Member (Voting Rights)

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    Perhaps Nath will come out and say ME/CFS really is a neurological disorder.

    Just kidding. ;)
     
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  6. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I'd really like someone to ask when is Dr.Collins going to meet with ME Action??
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    It's good to have them on there. :thumbup:

    You click on 'Thread tools' above your first post and it will allow you to add it to the calendar.
     
  8. MeSci

    MeSci Senior Member (Voting Rights)

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    OK - hope I've done it right.
     
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  9. Sasha

    Sasha Senior Member (Voting Rights)

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    Yes! Thanks. :)
     
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  10. Sasha

    Sasha Senior Member (Voting Rights)

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    Bump! This is on today.
     
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  11. Webdog

    Webdog Senior Member (Voting Rights)

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    Bump starting now.
     
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  15. Inara

    Inara Senior Member (Voting Rights)

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    @Tom Kindlon, would you give a link to that biobank (post death donation)?
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  17. Inara

    Inara Senior Member (Voting Rights)

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    Thank you! :)
     
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  18. MeSci

    MeSci Senior Member (Voting Rights)

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    Hope this hasn't been posted anywhere else. I'm not very with-it at the moment.

    Source: National Institutes of Health

    Date: August 2, 2018

    URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION

    News from NIH: Telebriefing audio and transcript now available
    ----------------------------------------------------------

    The audio recording and transcript of the July 19th telebriefing are now available on the NIH ME/CFS website

    https://www.nih.gov/research-traini...s/mecfs/nih-me/cfs-advocacy-call-july-19-2018

    Regards,

    The Trans-NIH ME/CFS Working Group
     
    ahimsa, mango, Inara and 2 others like this.
  19. Hutan

    Hutan Moderator Staff Member

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    Thanks @MeSci. Well, that was underwhelming. A large part of the presentation was about developing an app so that people with ME can log their symptoms. All very nice, but the schedule includes two years just developing the specification. Yes, yes, collaboration with patients is very important to get it right, but surely, with enough focus and resources, developing a specification for a basic app need only take 6 months?

    And there was talk of the app being linked to social media so that patients could interact with other patients... If they must use scarce NIH allocated funds for a new app rather than tweaking an existing symptom-logging app, surely the focus should be on making, quickly, a flexible app that simply allows for the gathering of the patient-reported data they need? If they want to go into the business of making fancy apps for patients with links to social media, just maybe they could do that after they have found the cause of the disease?

    Also, it's difficult not to respond cynically when we are told that it is a lack of brain tissue that is holding things back.

    I know at least some of the people on the call are indeed working hard, but the only sense of urgency came from the patients and carers who asked questions.
     
    Last edited: Aug 6, 2018
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