What is happening?
The Office of Management and Budget (OMB) has proposed new rules that would change how the federal government awards and manages every research grant in the country. This includes the federal grants that fund ME/CFS and Long COVID research. Before these rules can go into effect, there is a window for anyone to submit a comment telling the government what they think. You do not need to be a scientist, a lawyer, or an expert. If this disease affects your life, your voice counts.
Comment Deadline: July 13, 2026 (11:59 pm ET)
Proposed Effective Date: October 1, 2026 (if finalized as proposed)
Docket Number: OMB-2026-0034 (Anyone can comment)
Solve has submitted public comments. Read them here.
Why your comment matters even if the rule still moves forward
When the federal government proposes a new rule, it is required by law to give the public a chance to weigh in and to read and respond to what people say.
Here’s why that matters, even if the rule isn’t stopped outright:
- The government is asking for help figuring out the real cost. OMB released this rule without calculating how much damage it would actually do. They made it clear that they want the public to help fill in that picture. When you describe what this rule would mean for your life, your care, or the research you’re waiting on, that information goes into the official record the government has to consider before moving forward.
- Your comment can help in court. If this rule is challenged by a lawsuit after it goes into effect, judges will look at whether the government took public concerns seriously. Legal challenges are expected due to the sweeping nature of the regulation. Every specific, thoughtful comment submitted before the deadline strengthens the case that the government was warned and didn’t listen.
- Congress is watching. When thousands of people submit comments on a rule, it sends a signal to lawmakers that the issue is serious enough to act on, whether that means holding hearings, blocking funding for implementation, or passing legislation to override it.
- The government has to review all comments. If enough people raise a specific problem with a specific part of the rule, OMB is required to either fix it or explain why they didn’t. That’s how the worst provisions get weakened or removed. In this case, one big protest is less effective than a large collection of clear, specific objections they can’t ignore.
Five rules for a comment that gets taken seriously
- Write it in your own words. If a thousand people send the exact same letter, the government can disregard them. One message in your own words carries more weight than a form letter. Use our template below as a starting point, but make it yours.
- Name the specific part of the rule you’re talking about. The rule is broken into numbered sections. When you reference a section number (like §200.340), it shows the government you know what you’re talking about, and it creates an objection they’re required to address. If you just say “this is bad,” they can brush it off. We’ve listed the key sections we are focusing on and what they do below.
- Stick to the facts. Describe what the rule actually says but don’t exaggerate. An accurate comment is harder to dismiss. An exaggerated one gives the government an excuse to ignore your whole argument.
- Make it personal. Talk about your own life. How has ME/CFS or Long COVID affected you? Are you waiting on research for a treatment? Have you participated in a study? Do you know someone who has? Real stories carry more weight than abstract arguments.
- End by telling them what you want them to do. Be direct: “I urge OMB to withdraw §200.340” or “I urge OMB not to finalize this rule.” A clear ask gives your comment a purpose to which they must respond.
Key parts of the rule that affect our community
Here’s what key sections would do. You don’t need to reference all of them, just pick the ones that hit closest to home. You can read the full guidance here.
§200.340: Active research studies could be canceled at any time. The government could pull the plug on an ongoing study whenever it decides the work no longer fits its current priorities, even if nothing has gone wrong and the science is on track. Agencies would be required to include this cancellation right in every grant.
§200.205: Political appointees would have final say over which research gets funded. Every grant would need sign-off from a political appointee, and the rule says that recommendations from scientific peer reviewers, the experts who actually evaluate whether research is sound, are “advisory” only and should not be “routinely deferred to.”
§200.333: Small pilot grants would be eliminated. The simple, flexible grants that small labs, patient registries, and nonprofit biobanks depend on would no longer be allowed. This is because smaller organizations often don’t have the accounting infrastructure to handle the more complex grant format the rule would require instead.
§200.461: Publishing research findings would become harder to pay for. The costs of publishing in scientific journals would no longer be covered by grant funding unless a specific contract requires it or the agency approves it one case at a time.
§200.454: Researchers could lose access to the scientific literature. Subscriptions to the journals researchers need to stay current in their field would require specific prior government approval to be paid for with grant funds.
§200.432: Attending scientific conferences would require advance government permission. Researchers could only use grant funds to attend a conference if that specific conference was approved and written into their grant from the start. This would mean they wouldn’t be able to attend important meetings that come up after the grant is awarded.
How to submit your comment (takes about 10 minutes, free)
- Go to the rule page at federalregister.gov and click the green “Submit a Formal Comment” button. You can also go to regulations.gov and search for docket number OMB-2026-0034, then click “Comment.” Direct link here.
- Type or paste your comment in the box (there’s a 5,000-character limit — if you want to write more, you can attach a document). Comment as an individual, as they only allow one comment per person or organization. Your advocacy organizations will also be submitting formal comments separately.
- A note about privacy: everything you type (including your name if you provide one) will be posted publicly on regulations.gov. Don’t include your home address or phone number. You can comment anonymously or use just your first name.
- Check the “I am not a robot” box, click Submit, and save your tracking number (take a screenshot). You’re done.
Comment template (use as a starting point, but rewrite in your own words)
This four-paragraph structure is the format that carries the most weight. The bracketed sections show where your own story goes. Please don’t copy it word for word — personalize every part.
Who you are. “I am [a person living with ME/CFS for X years / a caregiver for someone with Long COVID / a participant in a federally funded research study / a member of the public whose family depends on medical research]. [One or two sentences about what this illness has meant for your life — what it has taken from you, what you’re still waiting for, and why research is the only path forward. There are currently no FDA-approved treatments for ME/CFS.]”
What parts of the rule concern you and what they would do. “I am writing to oppose proposed §200.340 and §200.205. Section 200.340 would allow the government to cancel active research grants at any time even if just because political priorities changed. Section 200.205 would require political appointees to approve every research grant, while making the recommendations of scientific experts explicitly advisory.” [Add §200.333, §200.461, §200.454, or §200.432 if they connect to your experience.]
The real-world harm. “ME/CFS and Long COVID research depends on studies that follow patients for years. [If you’ve participated in research: describe what you gave — blood draws, surveys, years of follow-up — and what it would mean if that study were canceled before it could produce answers.] If studies can be terminated whenever priorities shift, researchers can’t responsibly enroll patients, staff can’t be retained, and the taxpayer money already spent produces nothing. Patients like me give our time, our data, and our hope to research — this rule would let all of it be thrown away mid-study.”
What you want them to do. “I urge OMB to withdraw the discretionary termination provision in §200.340, restore the role of scientific peer review under §200.205, and not finalize this rule in its current form.”
Then Use Our Action Kit to Alert Members of Congress
Once you’ve left a comment, if you’d also like to make sure your members of Congress are aware of the issues, you can email and call them through our toolkit here.
Questions? Contact advocacy@solvecfs.org
How to Submit a Public Comment on the Proposed Federal Grant Rule
What is happening?
The Office of Management and Budget (OMB) has proposed new rules that would change how the federal government awards and manages every research grant in the country. This includes the federal grants that fund ME/CFS and Long COVID research. Before these rules can go into effect, there is a window for anyone to submit a comment telling the government what they think. You do not need to be a scientist, a lawyer, or an expert. If this disease affects your life, your voice counts.
Comment Deadline: July 13, 2026 (11:59 pm ET)
Proposed Effective Date: October 1, 2026 (if finalized as proposed)
Docket Number: OMB-2026-0034 (Anyone can comment)
Solve has submitted public comments. Read them here.
Why your comment matters even if the rule still moves forward
When the federal government proposes a new rule, it is required by law to give the public a chance to weigh in and to read and respond to what people say.
Here’s why that matters, even if the rule isn’t stopped outright:
Five rules for a comment that gets taken seriously
Key parts of the rule that affect our community
Here’s what key sections would do. You don’t need to reference all of them, just pick the ones that hit closest to home. You can read the full guidance here.
§200.340: Active research studies could be canceled at any time. The government could pull the plug on an ongoing study whenever it decides the work no longer fits its current priorities, even if nothing has gone wrong and the science is on track. Agencies would be required to include this cancellation right in every grant.
§200.205: Political appointees would have final say over which research gets funded. Every grant would need sign-off from a political appointee, and the rule says that recommendations from scientific peer reviewers, the experts who actually evaluate whether research is sound, are “advisory” only and should not be “routinely deferred to.”
§200.333: Small pilot grants would be eliminated. The simple, flexible grants that small labs, patient registries, and nonprofit biobanks depend on would no longer be allowed. This is because smaller organizations often don’t have the accounting infrastructure to handle the more complex grant format the rule would require instead.
§200.461: Publishing research findings would become harder to pay for. The costs of publishing in scientific journals would no longer be covered by grant funding unless a specific contract requires it or the agency approves it one case at a time.
§200.454: Researchers could lose access to the scientific literature. Subscriptions to the journals researchers need to stay current in their field would require specific prior government approval to be paid for with grant funds.
§200.432: Attending scientific conferences would require advance government permission. Researchers could only use grant funds to attend a conference if that specific conference was approved and written into their grant from the start. This would mean they wouldn’t be able to attend important meetings that come up after the grant is awarded.
How to submit your comment (takes about 10 minutes, free)
Comment template (use as a starting point, but rewrite in your own words)
This four-paragraph structure is the format that carries the most weight. The bracketed sections show where your own story goes. Please don’t copy it word for word — personalize every part.
Who you are. “I am [a person living with ME/CFS for X years / a caregiver for someone with Long COVID / a participant in a federally funded research study / a member of the public whose family depends on medical research]. [One or two sentences about what this illness has meant for your life — what it has taken from you, what you’re still waiting for, and why research is the only path forward. There are currently no FDA-approved treatments for ME/CFS.]”
What parts of the rule concern you and what they would do. “I am writing to oppose proposed §200.340 and §200.205. Section 200.340 would allow the government to cancel active research grants at any time even if just because political priorities changed. Section 200.205 would require political appointees to approve every research grant, while making the recommendations of scientific experts explicitly advisory.” [Add §200.333, §200.461, §200.454, or §200.432 if they connect to your experience.]
The real-world harm. “ME/CFS and Long COVID research depends on studies that follow patients for years. [If you’ve participated in research: describe what you gave — blood draws, surveys, years of follow-up — and what it would mean if that study were canceled before it could produce answers.] If studies can be terminated whenever priorities shift, researchers can’t responsibly enroll patients, staff can’t be retained, and the taxpayer money already spent produces nothing. Patients like me give our time, our data, and our hope to research — this rule would let all of it be thrown away mid-study.”
What you want them to do. “I urge OMB to withdraw the discretionary termination provision in §200.340, restore the role of scientific peer review under §200.205, and not finalize this rule in its current form.”
Then Use Our Action Kit to Alert Members of Congress
Once you’ve left a comment, if you’d also like to make sure your members of Congress are aware of the issues, you can email and call them through our toolkit here.
Questions? Contact advocacy@solvecfs.org