If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning:
I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has proven to be invaluable to the Department of Health and Human Services (HHS). The Secretary has decided not to renew the Charter after its expiration date of September 5, 2018. As you know, CFSAC was established in 2002 and during its 16-year tenure, it advised various HHS Secretaries on issues related to ME/CFS. The Committee was sunset effective September 5, 2018, at 11:59 p.m. Although the CFSAC Charter was not renewed, HHS remains committed to advancing research and programs on ME/CFS and providing resources to help individuals who are suffering from this complex and debilitating disease.
CDR Gustavo Ceinos, MPH
Designated Federal Officer
That means the committee was dissolved summarily and without notice as of first thing yesterday morning, September 6. There was no warning.
The Chronic Fatigue Syndrome Advisory Committee, or CFSAC, held its first meeting in 2003. The committee was formed to provide advice and recommendations to the US Secretary of Health and Human Services on issues related to Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (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. The meetings’ minutes, public and written testimonies, and many speakers’ presentations were made available online at the CFSAC HHS.gov website. #MEAction, Solve ME/CFS, IACFS/ME, Simmaron, 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.
This injudicious dismissal of one of the longest-running public meetings 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. There were many active subcommittees within CFSAC, including one 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.
If the intention was to replace CFSAC with some other entity, there is a right and a wrong way to propose such a shift. The right way would have required stakeholder engagement over a period of at least a few months to ensure that whatever was created next was in the best interests of patients. As a tool of engagement, CFSAC was far from perfect — but going from an imperfect solution to none at all is a huge step backward.
We should not have to justify that we deserve the space to speak to our government’s officials.
HHS has shown disrespect and a profound lack of professionalism with those who have been their colleagues, ‘firing’ them by email. #MEAction must convey our profound disappointment that HHS continues to show such disdain for the more than a million American citizens with ME.
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.
TAKE ACTION NOW. Tell HHS we will be heard!
We will come together to show HHS that we cannot be silenced.
We are planning to virtually protest the U.S. Department of Health and Human Service 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, and will reschedule at a later date. Our virtual protest on Friday will show HHS that we are not going away, and that the pressure is on! Click on the button for full details.Join the Protest!