#MEAction Sends Letter to HHS Demanding New Federal Committee on ME

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://meaction.net/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/ Myalgic Encephalomyelitis, Simmaron, Massachusetts ME/CFS & FM Association, and many other patient organizations and entities had presence over the life of the committee, as well as dozens of independent advocates. Clinicians, researchers, patients, and caregivers were all active participants.
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.

Contact Congress

Tell Congress to establish a new ME/CFS Federal Advisory Committee – through congressional action. Join the Congressional effort with the Solve ME/CFS Initiative using their one click.

Facebook
Twitter
WhatsApp
Email

Latest News

Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.

Why We Keep Telling the Story of ME to the Press

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the

Read More »
the words " #MillionsMissing 2023: Scotland calls for healthcare education" appear in white on a red-muted background with the #MEAction Scotland UK logo in the bottom right hand corner.

#MillionsMissing 2023: Scotland calls for healthcare education

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland. Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top