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US Chronic Fatigue Syndrome Advisory Committee meeting December 2017 YouTube playlist

Discussion in 'General ME/CFS news' started by Andy, Dec 19, 2017.

  1. Andy

    Andy Committee Member

    Hampshire, UK
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Have done a marathon watch of this.
    The agenda is here:

    It was very well organised and structured; started off a bit humdrum but they covered a lot of very important topics.

    Some things of interest;
    Lucinda Bateman is now on the committee.
    Montoya joined discussions on day 2.
    Making it more clear on CDC website that exercise/exertion could be harmful.
    Contacting health professionals to tell them to stop using the toolkit/ complete removal of the toolkit.
    Getting rid of old out of date information.........trying to get Mayo clinic to remove/change its totally incorrect info on ME/CFS.
    How to push for drug trials (eg Ampligen), FDA rep explained what was needed:
    (a clinical trial would need to show ANY improvement within 12 weeks, outcome measures could be anything).
    IMO the best bits were Day 1 part 5 and day 2 part 3 when they took public comments; ie people were able to phone in.

    I am not sure if there will be a transcript but they did take minutes of the whole thing.
    They also went thro and discussed a list of recommendations they plan to put forward.

    Shame there is not such transparency, open discussion in the UK.........can't see the CMRC doing anything similar.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    Thanks for those notes @Sly Saint - really useful for those not able to watch it all.

    Any particular public comments/replies that you thought were good?
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Just finished watching the last two parts.
    Overall I was very impressed; the collaboration was incredible.

    Montoya was able to talk openly about what he would like to be able to do re clinical trials, and the rep from the FDA was very helpful and instructive. Another scientist who is on the board was able to offer him info research done in her field relevant to what he was interested in looking at for ME.

    They (CFSAC) have set up a working group to try and get clinical trials going.

    This is their voting committee
    Voting Members
    Faith Newton, Ed.D
    Dover, DE
    Term: 07/01/14 to 07/01/18

    Alisa E. Koch, M.D.
    New York, NY
    Term: 06/16/14 to 06/15/18

    Jose G. Montoya, M.D.
    Stanford, CA
    Term: 06/16/14 to 06/16/18

    Donna M. Pearson
    Holland, MA
    Term: 06/16/14 to 06/16/18

    Amrit Shahzad, MBBS, MBA
    La Jolla, CA
    12/13/2017 to 12/12/2021

    Lucinda Bateman, M.D.
    Salt Lake City, UT
    12/13/2017 TO 12/12/2021

    the full list of committee members is here:

    The transcript will be available here: https://search.hhs.gov/search?q=cfs...ng_en&client=HHS&proxystylesheet=HHS&filter=0

    (but its not there yet).

    Most were very good but one important one was from Dr Lily Chu raising the issue about the ICD10 codes..........bad news and CFSAC have responded immediately. Lucinda Batemen and others are to tackle the issue before it is too late (ie March 2018)
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

    Last edited: Dec 24, 2017
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Just remembered what this was about; use of Leptin.........which has been researched in RA
    eg https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4137840/

    not sure if @Jonathan Edwards might have info on this that he might want to put on the Montoya
    Qand A thread?
    Last edited: Dec 26, 2017
    MEMarge, Trish and Andy like this.

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