US: Watch the CFS Advisory meeting – this Wed. and Thurs.

Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st – for the bi-annual Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
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.
The meeting is all-day-long from 9 a.m. – 5 p.m. EST; (6 a.m. – 2 p.m. PST). View the agenda.
[maxbutton id=”16″ url=”https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2018-06-20/index.html” text=”Watch the Meeting” ]  
#MEAction serves as a non-voting liaison on CFSAC, providing our community an opportunity to give feedback and important insights on the discussion, and plans to raise the issues below. #MEAction will also make a presentation at the CFSAC meeting.

  • 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
  • VA – follow up about plans for ME medical education

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).
Get involved!
Preparing for the CFSAC meeting involves a team of dedicated volunteers with the support of the #MEAction staff. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email [email protected].
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

Facebook
Twitter
WhatsApp
Email

Latest News

Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise

Read More »
a collection of millionsmisisng pictures featuring people protesting over the years in red shirts and with protest signs. white dashses connect the photos. the words words "the Story of the #MillionsMissing" is in white font in the top lefthand corner with the #MEAction logo there. The words "Coming Soon" is handwriting font is in the top righthand corner.

“#MillionsMissing is our drumbeat”–Preview Party 9/24

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world

Read More »

JNNP to publish edited rapid response by MEAction UK.

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of our rapid response to  ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’. We

Read More »