1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 9th December 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

USA: NIH National Institutes of Health news - next ME/CFS webinar 14 Jan 2025

Discussion in 'News from organisations' started by Andy, Jan 16, 2018.

Tags:
Page 17 of 31
  1. Helene

    Helene Senior Member (Voting Rights)

    Messages:
    199
    Anyone know if this will be available to watch after the event?
     
    Helene, Aug 21, 2023
    #321
  2. Helene

    Helene Senior Member (Voting Rights)

    Messages:
    199
    I'll answer that myself. Jarred Younger says in his youtube above that it will be recorded & available later.
     
    Helene, Aug 21, 2023
    #322
    Ash, cfsandmore, Joh and 8 others like this.
  3. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    2,205
    This is on now!!

    REMINDER: NIH ME/CFS Research Roadmap Webinar: Nervous System – August 25, 2023, 10am-2pm

    The first ME/CFS Research Roadmap webinar focused on the nervous system will take place on August 25, 2023, from 10:00 am – 2:00 pm ET. Please visit the webinar series website for the agenda, speakers, and more details. Join the Zoom webinar here (passcode: 616680). Click here to add the event to your calendar and for information about how to join by phone.
     
    Jaybee00, Aug 25, 2023
    #323
    Hutan, Starlight, Trish and 1 other person like this.
  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    2,205
    Making me sign in for a zoom government account. Anyone else getting this?
     
    Jaybee00, Aug 25, 2023
    #324
    Fizzlou likes this.
  5. Fizzlou

    Fizzlou Senior Member (Voting Rights)

    Messages:
    194
    Location:
    Cheshire
    Looked like they wanted us to register for meeting. I thought registration wasn’t required anymore. Didn’t join.
     
    Fizzlou, Aug 25, 2023
    #325
  6. Trish

    Trish Moderator Staff Member

    Messages:
    55,958
    Location:
    UK
    I'm going to wait until they put it all on line to watch in our own time without having to sign up to anything.
     
    Trish, Aug 25, 2023
    #326
    MEMarge, FMMM1, Sean and 2 others like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #327
    Hutan and Trish like this.
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #328
    Hutan likes this.
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #329
    Hutan likes this.
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #330
    Hutan and Fizzlou like this.
  11. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    I meant to listen to this, but the call was in the middle of my night and I didn't make it. Did anyone listen to the call who can give their overall impression? I can't access Twitter - those tweets linked above don't really say anything, summarising here in case they disappear:
    "Gudrun Lange spoke about cognitive function and said it was common.
    Peter Rowe talked about dysautonomia
    Jarred Younger said that few people are willing to tackle ME/CFS, EDS, MCAS
    Then a person with ME/CFS (Trisha) talked about her lived experience having had the disease for 30 years"

    Is there anything of substance in later tweets?

    Just looking at the agenda, this webinar, as the visible part of the
    "The NIH #MECFS Research Roadmap - nervous system"
    is looking rather underwhelming.
     
    Hutan, Aug 25, 2023
    #331
    RedFox and Trish like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #332
    RedFox and Hutan like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Aug 25, 2023
    #333
    Ash, Starlight, Binkie4 and 2 others like this.
  14. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    Logged on to twitter/X (still check every week or so) and saw this post, a graph with some unpublished data that was shown during the webinar.

    I'm attaching a screenshot rather than doing a link since there are still some access issues when not logged to the site.

    Cerebrospinal fluid proteome in MEcfs and post-covid.png
     
    ahimsa, Aug 26, 2023
    #334
    FMMM1, cfsandmore, Michelle and 10 others like this.
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Thanks @ahimsa, that looks pretty interesting. Are you able to see the percentage on the X axis label?
     
    Hutan, Aug 26, 2023
    #335
    Trish and chillier like this.
  16. LarsSG

    LarsSG Senior Member (Voting Rights)

    Messages:
    370
    LarsSG, Aug 26, 2023
    #336
    cfsandmore, Ash, ahimsa and 8 others like this.
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Thank you Lars!
    In case the tweet disappears later, the PC1 x axis accounts for 31.5%. I look forward to hearing more about this.
     
    Hutan, Aug 26, 2023
    #337
    Ash, ahimsa, Michelle and 5 others like this.
  18. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,446
    It was very good. Most information was well known (but still useful for people new to ME/CFS). Some information was new and interesting. There was a lot of discussion later about clinical trials and outcomes and I sensed a lot of interest in setting up clinical trials. There was a feeling of hope and optimism.
     
    Hoopoe, Aug 26, 2023
    #338
    FMMM1, Ash, RedFox and 10 others like this.
  19. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    240
    I don't remember seeing proteomics done on CSF before, looking forward to seeing the results in full.
     
    chillier, Aug 26, 2023
    #339
    Ash, RedFox and Starlight like this.
  20. dreampop

    dreampop Senior Member (Voting Rights)

    Messages:
    444
    Promising.
     
    dreampop, Aug 26, 2023
    #340
    Ash and SNT Gatchaman like this.
Page 17 of 31

Share This Page