Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human Services (HHS) that it had NOT accomplished its job when it suddenly dissolved the federal advisory committee – known as CFSAC – that makes recommendations on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and coordinates across federal agencies for our disease.
(We had to cancel our in-person protest in Washington, D.C. due to the impending hurricane Florence.)
Following our community-wide protest, #MEAction has sent a letter to HHS Secretary, Alex Azar, requesting a meeting to discuss reinstating a federal advisory committee for ME with a more robust charter.
[maxbutton id=”21″ url=”https://stgmeaction.wpengine.com/wp-content/uploads/2018/10/HHS-Meeting-Request.pdf” text=”Read the Letter” ]
At the time of shutdown, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) had groups working on pediatrics, medical education, Project Echo funding, and towards FDA approval of drugs for ME patients. The fate of these projects-in-progress is up in the air.
The Importance of CFSAC
CFSAC held its first meeting in 2003. The committee was formed to provide advice and recommendations to the US Secretary of HHS on issues related to ME and CFS. These issues were broad-ranging, including access and care for those with ME, the science of ME, and broader public health, clinical, research, and educational issues related to the disease. Its meetings were open to the public.
This meant that anyone from the community could call in and bring up issues relevant to the disease. #MEAction, Solve ME/CFS, the International Association for Chronic Fatigue Syndrome
CFSAC also represented 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.
Government officials have often referred advocates to CFSAC meetings to air grievances and discuss potential solutions. Walter Koroshetz of NINDS referenced CFSAC in his response to the letter #MEAction sent to Francis Collins as an important resource for patients.
The sudden, injudicious dismissal of one of the longest-running public meeting places 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. Though CFSAC was problematic and far from perfect, it presented an opportunity for powerful advocates to do good work. Going from an imperfect solution to none at all is a huge step backward.
What we’re fighting for is nothing less than our voice as a community — our lives as a community — and we refuse to be erased.
View the HHS Protest on Social Media
View our Sept. 2018 protest of the HHS on Twitter, Facebook or Instagram by searching with the hashtag #MissionNotAccomplishedHHS.