CFSAC Archives

Ten Organizations Ask Congress to Create Legislation for ME/CFS

November 9, 2018 7 Comments

On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives – Representatives Eshoo (CA18), Lofgren (CA19), McGovern (MA02), and Raskin (MD08) – requesting that they create legislation for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). To our knowledge, this is

NIH Director: Our Judge and Jury, Prison Guard and Executioner

June 26, 2018 No Comments

An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. *Note, an anonymous person gave this testimony. #MEAction has published it but did not

Mother Shares Heartbreaking Testimony about Sons with Severe ME

June 25, 2018 15 Comments

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated

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

June 19, 2018 No Comments

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

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

June 6, 2018 3 Comments

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

CFS Advisory Committee Seeks Voting Members

March 26, 2018 5 Comments

The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as voting members: One position for patients or caregivers affected by ME/CFS One position for an individual with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with ME/CFS

US: Family testifies about CDC's harmful recommendations at CFSAC

January 26, 2017 5 Comments

A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or

US: Read Terri Wilder's CFSAC Testimony

January 24, 2017 2 Comments

The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017. #MEAction activist, Terri Wilder, spoke during the comment period at

CFS Advisory Committee Meets

May 22, 2016 1 Comment

The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.

Online TV show to discuss ME/CFS Centers of Excellence

May 10, 2016 No Comments

Dr Kenneth J. Friedman will discuss the CFS Advisory Committee’s (CFSAC’s) upcoming proposal for ME/CFS Centers of Excellence and will explain what patients can do to make such centers a reality, in an online TV panel show on May 12. The one-hour show, which covers ME/CFS and Lyme Disease, will be broadcast on Channel 17

Tag: CFSAC