#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

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

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