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

A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top