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News from NIH: ME/CFS Telebriefing- October 23, 2018

Discussion in 'General ME/CFS News' started by MeSci, Oct 12, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: National Institutes of Health

    Date: October 11, 2018

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

    News from NIH: ME/CFS Telebriefing- October 23, 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 October 23, 2018, 12:00 pm until 1:00 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: 7178985

    If you will be calling from another country, please see the attached chart for your country's access information. (Presumably available via link)

    Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to join 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
     
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Do you want to add that to the calendar, @MeSci?
     
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  3. MeSci

    MeSci Senior Member (Voting Rights)

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    Hope I've done it right.
     
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  4. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks for doing that - yes, you've done it right and can see your listing here:

    https://www.s4me.info/calendar/
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Who are these people and is it something where we tell them what we think or ask questions or are they just broadcasting their thoughts like a podcast?
     
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    You can ask questions at the end.
     
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  7. Alvin

    Alvin Senior Member (Voting Rights)

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    I registered and logged in and only see this
    So we have to e-mail and request to join the call?
    So what was the logging in about?
     
  8. MeSci

    MeSci Senior Member (Voting Rights)

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    Sorry but I don't know anything about this - I just received notification of it.
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    I understand, its a general question to anyone who knows
    Have you participated on any of these calls before?
     
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I forgot about this. I hope some people did listen in or it would give the impression that there is not much interest in such events. This would not be a good message, especially when complaining about the closing of the CFSAC.

    I would have been more likely to remember it if they had mentioned who the speakers were going to be.
     
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  11. Hutan

    Hutan Moderator Staff Member

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    Yes, same. I'm interested to hear from anyone who was on the call.

    I'd like to get confirmation that Walitt has been replaced on the NIH Post-Infectious ME/CFS study and know who has replaced him (as well as, of course, hearing how they are going with the study and how they responded to any calls for more funding).
     
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  12. Dolphin

    Dolphin 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. rvallee

    rvallee Senior Member (Voting Rights)

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    Is this good or bad overall?

    Montoya leading the meeting is awesome. Program announcements being considered for ME but the whole process being replaced is... ? Not very surprising that there are few grants submitted. No one in their right mind will stake their research career on something that may be dried of funds whenever someone feels like it. Only very motivated researchers will take that risk, so it's no wonder so many either have a personal connection to a patient or have already firmly established careers in other areas of research.

    That's also why a lot of useless research is being done in other diseases because it's always safe. Maybe that's why the whole process is being replaced? There's clearly a lot of needs that are unmet at the expense of research that adds little to no understanding.
     
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  16. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Let's see how meeting with M.E Action goes on 7th December....fingers crossed
     
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  17. Alvin

    Alvin Senior Member (Voting Rights)

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    Assuming the NIH is not gaslighting us this seems to be a Mexican Standoff. The major players have tried for years to get money through repeated applications but got hung out to dry. They are either applying and still being denied or don't want to waste more resources after being burned so many times.
    Assuming the NIH is not gaslighting us and there really is money available...

    I don't have twitter but if someone wants to link my post or copy and paste it in a reply to that tweet please do.
     
    Last edited: Nov 22, 2018
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  18. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I don't think they are applying....
     
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  19. Alvin

    Alvin Senior Member (Voting Rights)

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    Many if not all have more then once.
     
  20. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I just mean fy2018 there were very few applications
     
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