***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.
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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.
8 thoughts on “Contact your CONGRESSIONAL REPRESENTATIVES now!”
It is imperative that the government expand, not diminish its response to ME/CFS at this critical juncture. The abrupt ending of CFSAC was ill-timed. CFSAC gave a voice to individuals with ME.
ME is costly for individuals and society alike. There are several promising research studies that highlight the need for timely care of individuals with ME/CFS. Now is the time to act.
Susan, may I copy/paste your words? I have trouble writing some days. Thank You fellow Warrior.
A form letter naming specific points would be helpful for those of us not feeling as sharp in our communication ability. I am much more likely to forward & sign a form letter when it covers the issue better than i can.
I got a message that my comments are too long to post. They can be read at
http://occupyme.net/2018/11/29/nihs-obstacle-course-to-success-for-mecfs-researchers/#comment-157849
or
https://forums.phoenixrising.me/index.php?threads/advocacy-action-alert-congressional-letter-to-hhs.62430/
Is there a list of showing who has signed the letter to HHS?
I got a message that my Rep (OR-1, Suzanne Bonamici) was likely to sign. And I’ve gotten no response from my senators yet.
If I knew who had signed I would know where to spend my energy (eg, won’t call someone who has already signed).
I know you are all very busy so no pressure but if the information on who has already signed is being collected by someone at ME Action then maybe it could be shared somewhere public? Thanks!
I got a letter from Mark Desaulnier. Did anyone else get this letter. I wanted other people to read it bc I’m not sure if it’s good news or bad news. You know the brain fog and everything. At first I thought it wAs great. But then after re reading I’m not sure. You know how they make the letters sound more positive than they actually are. Should I post the letter so you guys can read it? Thank you
Just received word from Congressman Jared Huffman’s office that he will sign on to recent letter to HHS.
This is a big victory because he refused to sign earlier letter. I was adamant that he needed to represent his constituents in Northern California. I combined my letter along with links to MEaction and quotes from CDC to prove to him that their is a urgent need for funding and research for this debilitating disease. I will continue to push him to not only sign letters of support but to be a leader of this cause in Congress.
Is there a ME Action group that actually meets or does things in Los Angeles area for my daughter, who has ME for over 10 years, to get involved in.
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