***UPDATE: THIS ACTION IS NOW OVER***
Please contact your MEMBERS OF CONGRESS IMMEDIATELY and urge them to sign a bicameral letter to the Department of Health and Human Services (HHS). The joint letter – from both the House and the Senate! – (1) states that more must be done by HHS to address ME/CFS needs, (2) describes the challenges we face, (3) requests HHS to explain how it will fill the gap left by the September, 2018 dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and (4) poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control.
THE DEADLINE FOR OBTAINING SIGNATURES IS WEDNESDAY DECEMBER 12.
This letter will take the place of the Senate Resolution we had been hoping to pass this year. Given CFSAC’s abrupt termination and other considerations, our Congressional supporters believe that a letter addressing CFSAC, as well as our ongoing concerns about what HHS is – and is not – doing, will be a more effective approach to addressing these issues given the short amount of time left in the Congressional calendar. The letter will also build on and leverage the many relationships we established in advocating for the Resolution this year, while laying the groundwork for our 2019 goals: potentially a revised resolution and, ideally, the introduction of legislation to create a statutory replacement for CFSAC and require specific HHS actions to improve the lives of people with ME.
There is no doubt that momentum for action on ME/CFS is building! Multiple Senate and House of Representatives offices contacted us following CFSAC’s termination and asked what they could do – we did not even have to prompt them!! We responded by working with the Solve ME/CFS Initiative and eight other ME organizations to send a letter to Representatives Eshoo (CA-18), Lofgren (CA-19), McGovern (MA-02), and Raskin (MD-08) explaining the vacuum left by the dissolution of CFSAC and detailing the type of legislation we believe is necessary to meet the needs of our community. There is now a firm foundation for next year’s work. Help us take our Congressional support directly to HHS by joining this Call to Action.