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Category Tag: CFSAC

Ten Organizations Ask Congress to Create Legislation for ME/CFS

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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) ...

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

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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 ...

Mother Shares Heartbreaking Testimony about Sons with Severe ME

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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 ...

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

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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 ...

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

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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 ...

CFS Advisory Committee Seeks Voting Members

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    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 ...

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

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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 ...

US: Read Terri Wilder’s CFSAC Testimony

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  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 ...

CFS Advisory Committee Meets

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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

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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 ...