We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday, Sept. 14th will show HHS that we are not going away, and that the pressure is on!
Everyone all over the world is welcomed to join the virtual protest!
HHS leadership has said that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) has accomplished its duties, and that the committee is no longer needed. This is complete and utter nonsense! We say that HHS has not accomplished its mission! Together, we will send that message to HHS in a worldwide virtual protest this Friday using the hashtag, #MissionNotAccomplishedHHS.
1. Take a photo of yourself doing one of these actions:
— Hold a sign with the hashtag #MissionNotAccomplishedHHS or use language such as:
“FYI, I’m still sick”
“So much more to do, we need you.”
“HHS has UNFINISHED Business!”
“Far from finished!”
— Cover your mouth with a bandana to show how HHS has silenced you
— All photos with our previous theme #HearMEnowHHS and “we will be heard” that you have already prepared are also welcomed, and most definitely relevant!
— Your own photo ideas are welcomed, but don’t forget to use the #MissionNotAccomplishedHHS hashtag and handles – see Facebook and Twitter instructions below.
2. Post the photo on social media:
Facebook: Along with your photo and message include the hashtag #MissionNotAccomplishedHHS (see example post).
Twitter: Along with your photo and message include the hashtag #MissionNotAccomplishedHHS. Tag HHS director using the twitter handles: @SecAzar and @HHSGov (see example tweet).
3. Invite your family and friends to participate! Encourage your family or friends to hold up a sign that says, “We miss playing outside with our mom” or a similar idea. Post on social media using the #MissionNotAccomplishedHHS hashtag and handles – see Facebook and Twitter instructions above.
4. Call on congress to establish a new ME/CFS Federal Advisory Committee – through congressional action – to ensure that our community will be heard! Contact Congress using the one-click, an action organized by Solve ME/CFS Initiative.
We want a meeting with the US Secretary of Health and Human Services, Alex Azar. He needs to hear how harmful this action is to the community. We want a federal advisory committee reinstated with a more robust charter. We demand a proper voice. We will continue meeting with individual agencies like the NIH and the CDC to make ourselves heard. But Secretary Alex Azar needs to know what we’re fighting for is nothing less than our voice as a community — our lives as a community — and we will not be silenced.
Why we are protesting
The charter for CFSAC, the Chronic Fatigue Syndrome Advisory Committee was dissolved without notice on September 5th by HHS (the U.S. Department of Health and Human Services). This action eliminates the committee that gave patients and activists a platform to provide advice and recommendations to the U.S Secretary of Health and Human Services on issues related to Myalgic Encephalomyelitis (ME). This injudicious dismissal of one of the longest-running public meeting platforms between patients and their government isn’t just worrying — it’s an insult. It shows a breathtaking degree of disrespect, and a lack of understanding of what patients and stakeholders have sacrificed and contributed over the years.
CFSAC presented the opportunity for clinicians, researchers, patients and caregivers to call in and to represent themselves, point at problems, and suggest solutions. CFSAC was also one of the only places where multiple agencies could coordinate an action, allowing advocates and ex-officios to combine forces and share information about projects.
Though CFSAC was problematic and far from perfect, it represented an opportunity for powerful advocates to do good work. There were many active subcommittees within CFSAC, including one working on medical education, one fighting for Project ECHO funding, and one group working towards FDA approval of medications for ME. It is unclear what will happen to these projects.
The termination of CFSAC comes at a time when we are just beginning to see action on CFSAC recommendations, coordination across agencies and stakeholder involvement in agency actions. The committee’s dissolution is unacceptable. Read more.
We are losing so much, and we must fight back. If you’ve been waiting and wondering what action should be your first with us, now is the time. We need all hands on deck!
** This turn around is fast, we know. But we have to show HHS that their actions are unacceptable. We will be updating this document as we learn more.