From the ME/CFS Patient, Advocate, Clinical and Research Community
Dear Dr. Unger,
On the occasion of your retirement from the Centers for Disease Control and Prevention, we – patients, caregivers, clinicians, researchers, and advocates – want to offer our appreciation for your service on behalf of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
For too long ME/CFS has been underrecognized, underfunded, and misunderstood by our healthcare and research systems. Amid this, you worked to protect the CDC’s ME/CFS program during periods when it could have been deprioritized or defunded. That program remained intact—and today it continues to anchor the federal government’s efforts on ME/CFS with a $5.4 million annual investment. We all know this is certainly not enough, yet we are appreciative that it remains.
We are grateful for the progress you helped spearhead.
You launched a landmark multi-site clinical study in partnership with leading ME/CFS clinics, setting the stage for future biomarker discovery and diagnostic development. You prioritized accurate prevalence data, helping us confront one of the biggest barriers to federal funding and public awareness: the lack of reliable national estimates. You started a pilot program to help school nurses identify and help children with ME/CFS. You expanded Project ECHO-style provider education programs, bringing ME/CFS training to front-line clinicians—especially in rural and underserved areas. You opened up CDC’s engagement with patients, caregivers, and advocates to improve the information about ME/CFS on the CDC website, and through regular stakeholder calls, brought transparency into a space where it had long been lacking. And in 2016, you used your voice in one of CDC’s most visible platforms – its Grand Rounds – to publicly affirm that ME/CFS is real, serious, and deserving of urgent public health attention.
None of this progress came easily. You navigated a complex bureaucracy, institutional inertia, and long-standing stigma. You brought scientific rigor to a field long marred by misinformation. While others minimized ME/CFS, you helped make it visible.
As you retire, we know there is still much more work to be done. We hope that the CDC will build on your work—by implementing the directives set forth by Congress, investing in the next phase of ME/CFS research and surveillance, and continuing to center the voices of patients.
But today, we pause to thank you for holding the line when others may not have. Thank you for listening to our community and for keeping the CDC ME/CFS program alive—so it can continue to grow.
With respect and appreciation,
The ME/CFS Community
You can see the list of people and organizations that have already signed on here.
