1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

November CFSAC meeting MOVED to December

Discussion in 'Upcoming ME/CFS Events' started by Hope123, Oct 22, 2013.

  1. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    Got this from CFSAC:; if you want to receive updates, sign up for the CFSAC listserv on the last line.

    *************************************************************************************************************

    Due to the shutdown of the federal government, the next CFSAC meeting is being postponed until December 10-11, 2013 from 12:00 p.m. to 5:00 p.m. (EDT). The agenda will be posted on the CFSAC website no later than November 15, 2013.

    We now have the capacity to accept pre-recorded video testimony for public comment and will continue to schedule public comment via phone and accept written submissions. The Federal Register Notice will be posted no later than November 18 and include detailed instructions for joining the webinar and requesting public comment. Information will also be posted on the CFSAC website at www.hhs.gov/advcomcfs.

    Please know that we value your involvement and regret any inconvenience that this delay may have caused you. Thank you for your patience as we work through this challenging time.

    Thank you,
    CFSAC Support Team



    The CFSAC Support Team
    http://www.hhs.gov/advcomcfs/index.html


    Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
    http://www.hhs.gov/advcomcfs/cfsac_email_list.html
     
    Valentijn likes this.
  2. Nielk

    Nielk

    Messages:
    5,273
    Likes:
    5,292
    Queens, NY
    It gives us a little more time to prepare. Is anyone planning to send in a video? Any ideas for this?
     
  3. Bob

    Bob

    Messages:
    8,598
    Likes:
    11,536
    South of England
    Would the CFSAC meeting be an appropriate forum to submit testimony as to why we believe the IOM process is flawed?
     
    Valentijn likes this.
  4. Nielk

    Nielk

    Messages:
    5,273
    Likes:
    5,292
    Queens, NY

    It certainly is!

    In their Statement of Work, HHS states:

    We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month. This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them. The NIH is convening an Evidence-based Methodology Workshop process that will consider case definitions appropriate for
    ME/CFS research and the IOM will address the clinical diagnostic portion of the recommendation.


    Since HHS claims that the IOM contract grew out of CFSAC's recommendation to the Secretary, it is definitely the platform that we can use to voice our opinions.
     
    Bob, shannah and Valentijn like this.
  5. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    CFSAC Dec2013 <CFSACDec2013@seamoncorporation.com>
    6:20 AM (3 hours ago)
    [​IMG]
    [​IMG]
    [​IMG]
    to CFSAC
    [​IMG]
    Greetings:
    Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC. This includes the tech support we need for webinars.
    Unfortunately, we cannot have the webinar today. Additionally, we cannot get the CFSAC website updated today.
    We will have the webinar tomorrow (Wed. Dec. 11) beginning at noon ET, IF govt. offices are open. Dr Gailen Marshall, the CFSAC Chair, will work with the committee members at the beginning of the webinar to modify the agenda to accommodate the compressed timeframe.
    We will have public comment tomorrow for those who were scheduled to speak on Wed. Unfortunately, we won’t be able to accommodate the public comments that were scheduled for Tuesday because we cannot confirm with the speakers that they are available for the Wednesday time slot.
    So that we have more time for the Committee to deliberate and discuss, we ask those providing public comment tomorrow to limit their speaking time to 3 minutes.
    If we must cancel the webinar tomorrow (DC doesn’t handle snowy, icy roads well), we will reschedule the CFSAC meeting webinar to occur after the first of the year.
    More info on government closure in DC at www.OPM.gov
    We regret that this has happened. We hope to be on the webinar with you tomorrow!
     
    Valentijn likes this.
  6. Nielk

    Nielk

    Messages:
    5,273
    Likes:
    5,292
    Queens, NY
    Many patients and advocates are upset with the fact that HHS will not replace the meeting to a two day format at another time.

    If you want to voice your concern, you can e-mail Nancy Lee at Nancy.Lee@hhs.gov

    This is the e-mail that I just sent out.
     

See more popular forum discussions.

Share This Page