Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13

You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that they take urgent and strategic action for people with Myalgic Encephalomyelitis.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its bi-annual meeting on June 20th and 21st, and we need to fill up the time slot for public comment to show our health officials that we are paying attention. (You don’t need to attend in-person – public comment can be made via phone, and you can watch the two-day meeting via livestream.) 
The deadline to request a time slot for public comment is Wednesday, June 13. See instructions below.
The Status quo is not acceptable. Officials need to hear from you about why change needs to happen now. Don’t worry if you’ve never spoken before a government committee before – it is simple. Share a little bit about how ME has affected you, and how you strongly urge the NIH and other agencies to review and take action on the strategic plan for addressing the crisis of ME that #MEAction has submitted to NIH director, Francis Collins.
CFSAC is an important committee that provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.

To request a time slot for public comment:

To request a time slot for public comment, please send an email to [email protected] by Wednesday, June 13. The email should contain the speaker’s name and telephone number that will be used for public comments. If you would like #MEAction to provide feedback / input on your CFSAC comment, please email [email protected].

About CFSAC:

The CFSAC meeting provides a key opportunity to raise issues with representatives from the following federal agencies: NIH, FDA, CDC, Dept. of Defense, Dept. of Veteran Affairs, Social Security Administration (SSA), Agency for Healthcare Research and Quality (AHRQ) and Health Resources and Services Administration (HRSA).
#MEAction serves as a non-voting liaison on CFSAC, providing our community an opportunity to give feedback and important insights on the discussion. #MEAction will have the opportunity to make a presentation at the CFSAC meeting, and plans to address the following issues:

  • Ask the NIH to respond to the community’s demand that the NIH develop a strategic plan for ME, as detailed in the community letter sent to Francis Collins.
  • ICD-10 revisions
  • CDC’s pediatric study
  • Clinical care crisis and ongoing stigma
  •  Ampligen – ask the FDA to provide an update on what is going on between FDA and Hemispherx regarding Ampligen.
  • VA – follow up about plans for ME medical education

Meeting information: 
June CFSAC agenda
Wednesday, June 20, 2018, 9 a.m. – 5 p.m. EST; (6 a.m. – 2 p.m. PST)
Thursday, June 21, 2018 from 9 a.m. until 5 p.m. EST; (6 a.m. – 2 pm PST)
Learn more about CFSAC:
The Committee shall advise and make recommendations to the Secretary of HHS on a range of topics including:
(1) opportunities to improve knowledge and research about the epidemiology, etiologies, biomarkers and risk factors for ME/CFS;
(2) research on the diagnosis, treatment, and management of ME/CFS and potential impact of treatment options;
(3) strategies to inform the public, health care professionals, and the biomedical academic and research communities about ME/CFS advances;
(4) partnerships to improve the quality of life of ME/CFS patients;
(5) strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.
Please help us continue advocacy work like our involvement in CFSAC. Support our #MEAction 2018 Fundraising Campaign


3 thoughts on “Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13”

  1. Bazia Ann Zebrowski

    Ive got my time slot!
    5 minutes time allotted!
    Should I take half of it, thats 2.5 minutes in silence for the 2.5 million suffering?

    1. Adriane Tillman

      Wonderful, Bazia! I like the symbolism of the 2.5 minutes. If you don’t plan to use the other 2.5 minutes, maybe we can find someone to make a comment, as well. Email [email protected] if you’d like to discuss more.

  2. Hi, I am a sufferer of M.E. Currently, it takes all my energy to get up each day, dressed, take my meds, and eat for the past 2 weeks. I’ve lost all strength. My weight has dropped significantly. My pain meds do not help much.
    The one thing I need is to make people aware that this is real and so debilitating. Thx, Beth

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