This week, Solve submitted public comments on proposed changes to the Centers for Disease Control (CDC) National Health Interview Survey (NHIS) that would make it harder to track ME/CFS and Long Covid prevalence.
Why the CDC’s ME/CFS and Long Covid Survey Questions Matter
The CDC’s National Health Interview Survey is one of the main ways the federal government tracks the health of Americans, and it’s where the national ME/CFS numbers come from. It’s how we know that about 1.3% of U.S. adults were living with ME/CFS in 2021–2022, and the CDC has continued to ask about ME/CFS on the survey since then.
Now, CDC is redesigning the survey for 2028, and the new draft omits questions on ME/CFS, Long Covid, and fatigue entirely. If these questions disappear, it becomes much harder to show how many of us there are living with this illness, to track whether things are getting better, and to make the case for the research and care our community needs.
The CDC’s National Center for Health Statistics (NCHS) has asked for comments on “the importance of specific content additions or removals” and on “the potential effect of these changes on data quality, usability, and trend measurement.”
Read the full text here (click “download file”).
Solve has submitted comments urging NHCS to:
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- Include ME/CFS in the redesigned survey, using the two questions NCHS has already asked: whether a doctor has ever told the person they had ME/CFS, and whether they still have it.
- Include Long Covid, using the established question about symptoms lasting 3 months or longer after COVID-19, plus the follow-up on current symptoms.
- Keep at least one question that measures fatigue.
- Keep the disability-related questions proposed for removal.
Read Solve’s comments here.
If you’d like to submit comments of your own, you can use our template below.
How to Submit Public Comments on the 2028 NHIS Redesign
- Go to regulations.gov.
- Click “Comment” at the top of the page.
- You can write up to 5,000 characters in the comment box, but if you would like to leave a longer comment, you will need to upload it as a .pdf or .docx file using the “Browse” button or by dragging and dropping the file into the box.
- Enter your email address.
- Select whether you are commenting as an individual, organization, or anonymously (an anonymous submission will not require your email address).
- Complete the CAPTCHA.
- Click “Submit Comment” at the bottom.
Comment Template:
Re: Docket No. CDC-2026-1387, National Health Interview Survey
I am writing as [a person living with ME/CFS / a person living with Long Covid / a caregiver for someone with ME/CFS or Long Covid]. I am concerned that the proposed 2028 redesign of the National Health Interview Survey (NHIS) leaves out ME/CFS and Long Covid.
The NHIS is where the national numbers for these illnesses come from. It’s how we know that about 1.3% of U.S. adults were living with ME/CFS in 2021–2022, and it tracked Long Covid from 2022-25. The 2028 draft asks about other chronic conditions, but not ME/CFS or Long Covid, and it has no questions about fatigue. The disability questions that remain don’t capture what impacts people with these illnesses most: the worsening of symptoms after even small amounts of activity.
[Optional: Share a sentence or two about how your illness affects your life.]
Being counted matters. Without this data, it is harder to show how many people are affected, whether things are getting better, and why research and care deserve investment.
CDC says the redesigned survey can still add new topics. I urge CDC to include ME/CFS and Long Covid questions – especially on post-exertional malaise, keep questions on fatigue, and keep the disability questions which are currently proposed for removal.
Thank you for considering my comment.
Sincerely,
[Your name]
Our community has too much riding on this data to go uncounted. Thank you for adding your voice!
Solve Urges CDC to Keep ME/CFS, Long Covid in National Health Interview Survey (NHIS)
This week, Solve submitted public comments on proposed changes to the Centers for Disease Control (CDC) National Health Interview Survey (NHIS) that would make it harder to track ME/CFS and Long Covid prevalence.
Why the CDC’s ME/CFS and Long Covid Survey Questions Matter
The CDC’s National Health Interview Survey is one of the main ways the federal government tracks the health of Americans, and it’s where the national ME/CFS numbers come from. It’s how we know that about 1.3% of U.S. adults were living with ME/CFS in 2021–2022, and the CDC has continued to ask about ME/CFS on the survey since then.
Now, CDC is redesigning the survey for 2028, and the new draft omits questions on ME/CFS, Long Covid, and fatigue entirely. If these questions disappear, it becomes much harder to show how many of us there are living with this illness, to track whether things are getting better, and to make the case for the research and care our community needs.
The CDC’s National Center for Health Statistics (NCHS) has asked for comments on “the importance of specific content additions or removals” and on “the potential effect of these changes on data quality, usability, and trend measurement.”
Read the full text here (click “download file”).
Solve has submitted comments urging NHCS to:
Read Solve’s comments here.
If you’d like to submit comments of your own, you can use our template below.
How to Submit Public Comments on the 2028 NHIS Redesign
Comment Template:
Re: Docket No. CDC-2026-1387, National Health Interview Survey
I am writing as [a person living with ME/CFS / a person living with Long Covid / a caregiver for someone with ME/CFS or Long Covid]. I am concerned that the proposed 2028 redesign of the National Health Interview Survey (NHIS) leaves out ME/CFS and Long Covid.
The NHIS is where the national numbers for these illnesses come from. It’s how we know that about 1.3% of U.S. adults were living with ME/CFS in 2021–2022, and it tracked Long Covid from 2022-25. The 2028 draft asks about other chronic conditions, but not ME/CFS or Long Covid, and it has no questions about fatigue. The disability questions that remain don’t capture what impacts people with these illnesses most: the worsening of symptoms after even small amounts of activity.
[Optional: Share a sentence or two about how your illness affects your life.]
Being counted matters. Without this data, it is harder to show how many people are affected, whether things are getting better, and why research and care deserve investment.
CDC says the redesigned survey can still add new topics. I urge CDC to include ME/CFS and Long Covid questions – especially on post-exertional malaise, keep questions on fatigue, and keep the disability questions which are currently proposed for removal.
Thank you for considering my comment.
Sincerely,
[Your name]
Our community has too much riding on this data to go uncounted. Thank you for adding your voice!