The National Institute of Allergy and Infectious Diseases (NIAID) has proposed a reorganization that would eliminate its Division of Clinical Research and spread its work across other offices. We have some concerns. The plan is moving way too quickly, with a public comment window of only five days (September 14–18), and the (somewhat scant) details of the plan were only posted as that window opened.
We need your help to make sure a change this consequential doesn’t slip through without time to assess what it would mean for ME/CFS and Long Covid research. Public comment deadline: Friday, September 18, 2026.
Why the NIAID Reorganization Matters for ME/CFS and Long Covid:
The Division of Clinical Research is the behind-the-scenes infrastructure for clinical trial design, biostatistics, data collection, and safety monitoring that help carry a biomedical discovery from the lab into treatments people can actually access. It’s the connective tissue of a clinical trial, and it’s easy to underestimate its impact until it’s gone: a dedicated division concentrates the specialized expertise and coordinated oversight that complex, multi-site trials depend on. Spreading those functions across several other offices, however well-intentioned, risks fragmenting that coordination and opening gaps that are far easier to create than to rebuild.
This isn’t abstract for us. NIAID is the home of RECOVER-TLC, the current round of NIH’s Long Covid treatment trials. After years of development, the first of those trials is only now enrolling patients, with several more due to open this fall. We need a one-stop shop to coordinate these types of studies. Restructuring the home of that infrastructure while those trials are mid-stride inserts uncertainty and confusion into a process that has already taken far too long to get to the point of clinical trials.
We also have a procedural concern. A comment window of only five days, opening the same moment the restructuring plan became public, doesn’t give patients, families, researchers, or clinicians a real chance to read the proposal before it closes. A change this significant deserves time for all stakeholders, especially the lived-experience community, to review it before it moves forward.
What we’re asking NIAID for: Extend the comment period so the public can actually read the plan, and preserve the coordinated clinical research oversight this division provides. Solve has submitted its own detailed comment, which you can read here, and the most powerful thing you can add is your own voice. Even a single sentence counts!
How to post your comment (about 2 minutes):
- Go to the NIAID page: niaid.nih.gov/about/niaid-organization-dcr
- Scroll to the bottom of the page.
- Click “Leave a comment.”
- Type or paste your comment in the box (you’re welcome to use the template below).
- Click “Submit.” That’s it.
The deadline is Friday, September 18.
Wording you can paste and make your own:
I’m writing as [a person with ME/CFS / a Long Covid patient / a caregiver / a supporter] to ask NIAID to slow down this proposed reorganization of the Division of Clinical Research. Consolidated clinical research infrastructure is what turns discoveries into treatments patients can actually access, and millions of us living with [ME/CFS / Long Covid] are counting on the clinical trials NIAID supports, including the Long Covid treatment trials now underway. Please extend the public comment period so the public can review the full plan, and please protect the coordinated clinical research oversight this division provides. [One line in your own words — who you are, and what waiting for treatment has meant for you or your family.] Thank you.
If you have specific questions about the plan, you can email them to Katherine Beck, Ph.D., Acting Deputy Director for Science Management at NIAIDExecutiveServices@mail.nih.gov.
Comment by Friday, Sept. 18: Protect ME/CFS & Long Covid Research
The National Institute of Allergy and Infectious Diseases (NIAID) has proposed a reorganization that would eliminate its Division of Clinical Research and spread its work across other offices. We have some concerns. The plan is moving way too quickly, with a public comment window of only five days (September 14–18), and the (somewhat scant) details of the plan were only posted as that window opened.
We need your help to make sure a change this consequential doesn’t slip through without time to assess what it would mean for ME/CFS and Long Covid research. Public comment deadline: Friday, September 18, 2026.
Why the NIAID Reorganization Matters for ME/CFS and Long Covid:
The Division of Clinical Research is the behind-the-scenes infrastructure for clinical trial design, biostatistics, data collection, and safety monitoring that help carry a biomedical discovery from the lab into treatments people can actually access. It’s the connective tissue of a clinical trial, and it’s easy to underestimate its impact until it’s gone: a dedicated division concentrates the specialized expertise and coordinated oversight that complex, multi-site trials depend on. Spreading those functions across several other offices, however well-intentioned, risks fragmenting that coordination and opening gaps that are far easier to create than to rebuild.
This isn’t abstract for us. NIAID is the home of RECOVER-TLC, the current round of NIH’s Long Covid treatment trials. After years of development, the first of those trials is only now enrolling patients, with several more due to open this fall. We need a one-stop shop to coordinate these types of studies. Restructuring the home of that infrastructure while those trials are mid-stride inserts uncertainty and confusion into a process that has already taken far too long to get to the point of clinical trials.
We also have a procedural concern. A comment window of only five days, opening the same moment the restructuring plan became public, doesn’t give patients, families, researchers, or clinicians a real chance to read the proposal before it closes. A change this significant deserves time for all stakeholders, especially the lived-experience community, to review it before it moves forward.
What we’re asking NIAID for: Extend the comment period so the public can actually read the plan, and preserve the coordinated clinical research oversight this division provides. Solve has submitted its own detailed comment, which you can read here, and the most powerful thing you can add is your own voice. Even a single sentence counts!
How to post your comment (about 2 minutes):
The deadline is Friday, September 18.
Wording you can paste and make your own:
I’m writing as [a person with ME/CFS / a Long Covid patient / a caregiver / a supporter] to ask NIAID to slow down this proposed reorganization of the Division of Clinical Research. Consolidated clinical research infrastructure is what turns discoveries into treatments patients can actually access, and millions of us living with [ME/CFS / Long Covid] are counting on the clinical trials NIAID supports, including the Long Covid treatment trials now underway. Please extend the public comment period so the public can review the full plan, and please protect the coordinated clinical research oversight this division provides. [One line in your own words — who you are, and what waiting for treatment has meant for you or your family.] Thank you.
If you have specific questions about the plan, you can email them to Katherine Beck, Ph.D., Acting Deputy Director for Science Management at NIAIDExecutiveServices@mail.nih.gov.