1. The 'News in Brief' post for w/c 4th Nov can be read by clicking here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

News from NIH: ME/CFS Telebriefing- April 9, 2019

Discussion in 'General ME/CFS News' started by MeSci, Mar 22, 2019.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,802
    Likes Received:
    11,231
    Location:
    Cornwall, UK
    Source: National Institutes of Health

    Date: March 21, 2019

    URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION (log-in required)

    News from NIH: ME/CFS Telebriefing- April 9, 2019
    -------------------------------------------------

    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 April 9, 2019, 2:00 pm until 3:00 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. (not attached, presumably log-in required)

    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

    --------
    (c) 2019 NIH
     
    Webdog, MEMarge, Trish and 5 others like this.
  2. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    213
    Likes Received:
    1,212
    Has NIH explained why this teleconference is being held 4 days after their conference on accelerating ME research?
    What is NIH going to convey during the teleconference (the conference the previous week will have updates on the clinical study)?

    Clinicians and researchers who viewed/took part in the conference will be scrambling to catch up after being away from their work - so they likely won't take part in the teleconference.
    Patients will be recovering from taking part (remotely or in person) - so few will be in a position to take part.
    [edited this line] Caregivers will be taking care of patients, some of whom exceeded their cognitive and or physical exertion limits by taking part in the conference, etc.....

    Some of the trans-NIH working group members(hosting the teleconference) are part of the conference on the 4th and 5th so it's not as though they don't know about the other event.....
     
    Last edited: Mar 22, 2019
    WillowJ, Esther12, Sly Saint and 9 others like this.
  3. ChloeC

    ChloeC Established Member

    Messages:
    14
    Likes Received:
    91
    Bump--this is happening today! Per @Denise 's post, many advocates, activists, researchers, etc may not be able to join this call, so please call in if you're not PEM-ed out yourself! It's important that we hold the NIH's feet to the fire in the wake of the conference so they finally give us a real funding plan.
     
    Ron, rvallee, Esther12 and 7 others like this.
  4. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    727
    Likes Received:
    5,398
    Bump, this is in 15 minutes!
     
    Andy likes this.
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    7,903
    Likes Received:
    57,768
    Location:
    Hampshire, UK
    WillowJ, ChloeC, ukxmrv and 6 others like this.
  6. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    668
    Likes Received:
    2,918




    (good thread on this)
     
    Last edited: Apr 11, 2019
    rvallee and Andy like this.
  7. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    668
    Likes Received:
    2,918


    Pretty sure there was a Fukda study but idk if the stats match.
    Checked, they do.
    https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full
    @JaimeS I found your sources.
     
    Last edited: Apr 11, 2019
    rvallee and Andy like this.
  8. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    668
    Likes Received:
    2,918

    More at link
     
    Andy likes this.
  9. Andy

    Andy Committee Member & Outreach

    Messages:
    7,903
    Likes Received:
    57,768
    Location:
    Hampshire, UK
    Can somebody clarify for me. Last I understood, the NIH intermural study was struggling to recruit enough participants - is that not the case now?
     
  10. WillowJ

    WillowJ Senior Member (Voting Rights)

    Messages:
    668
    Likes Received:
    2,918
    They have lots of volunteers.

    Not a lot seem to qualify as having doctor's records of an infection at time of onset, having ME, and having a new enough onset. Not sure whether or not they're having an issue with being able to travel and able to take an exercise test.

    Also it takes a lot of time to go through the study itself.

    So it seems slow to me, but it's not that they don't have volunteers. Last I heard recruiting was still open, however.
     
    Andy likes this.
  11. Andy

    Andy Committee Member & Outreach

    Messages:
    7,903
    Likes Received:
    57,768
    Location:
    Hampshire, UK
    Great, thanks. :)
     
    WillowJ likes this.
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    950
    Likes Received:
    9,148

Share This Page