On March 15, Long Covid Awareness Day, Solve’s VP of Advocacy and Engagement Emily Taylor was quoted by STAT in its coverage of the push for a new office at the National Institutes of Health (NIH) to study chronic conditions that spring from infections, including ME/CFS and Long Covid. As a point of reference, Solve and other advocacy groups liken the proposed new entity to the year-old Office of Autoimmune Disease Research.
The hope is that the entity would have funding authority and the power to orchestrate NIH-wide research and trials. Taylor told STAT, “It’s unclear what shape or form that final entity will take…I truly believe that if we spent five years at $1 billion a year, we would have treatments for this community.”
Read the STAT article in its entirety here.
That same day, the Federation of American Scientists also released a white paper calling for the creation of a new NIH office. Citing economic and ethical reasons for the need, author and ME/CFS patient advocate Ryan Prior noted that post-infection conditions affect millions in the U.S. but are not adequately addressed with the current NIH structure.
Read the FAS white paper in its entirety here.
The coverage in both publications coincided with Solve’s announcement of our Advocacy Week 2024 congressional ask: “To establish a coordinating mechanism at the NIH that addresses infection-associated chronic conditions and illnesses, such as ME/CFS, Long Covid, Chronic Lyme, and POTS and other dysautonomias. This would convene researchers across specialities, streamline resources, facilitate/require patient engagement, and improve external outreach with a plan to foster collaborative research, including through clinical trials and sites.”
Stay tuned for more information on our Advocacy Week 2024 talking points.
