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ME/CFS Science
@mecfsscience.org

1) News from Solve ME: The CDC plans to shorten the National Health Interview Survey (NHIS) so that it no longer includes questions about ME/CFS and Long Covid. The NHIS has previously been used to estimate ME/CFS prevalence at 1.3%

ME/CFS Science
@mecfsscience.org

2) The NHIS is one of the main ways the federal government tracks the health of Americans. It exists since 1957 and queries a representative sample of the US population.

ME/CFS Science
@mecfsscience.org

3) Here's the link to the 2026 version. It still include questions about ME/CFS such as: "Have you EVER been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis." ftp.cdc.gov/pub/Heal...

ME/CFS Science
@mecfsscience.org

4) These will remain in the 2027 version but in 2028 they plan to use a much shorter version that asks about multiple health conditions but no asks about ME/CFS, Long Covid or even fatigue and energy limitations in general. Link: www.cdc.gov/nchs/dat...

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ME/CFS Science
@mecfsscience.org

5) This is just a proposal and the CDC’s National Center for Health Statistics (NCHS) has asked for comments and feedback. Solve wrote a detailed reply urging them to keep questions about ME/CFS and Long Covid in.

ME/CFS Science
@mecfsscience.org

6) We've previously analysed ME/CFS data from NHIS and unfortunately think they are quite unreliable (the age distribution for example didn't match what is known about ME/CFS). For more info see this analysis on the S4ME forum:

s4me.infoCDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al | Page 3 | Science for METrial By Error: Update on NICE Response to “Anomalies” Paper; Higher ME/CFS Population Estimates in CDC Survey "Last month, the CDC released new estimates...
ME/CFS Science
@mecfsscience.org

7) The value of NHIS for ME/CFS prevalence estimates is quite limited but I would probably support including the question anyway. Perhaps in the future if awareness of ME/CFS increases, self-reports might also become more reliable.

ME/CFS Science
@mecfsscience.org

8 ) Here's the link to the Solve ME article. They are calling on other to submit public comments to the CDC as well and have provided a template for this:

solvecfs.orgSolve Urges CDC to Keep ME/CFS, Long Covid in National Health Interview Survey (NHIS) - Solve ME/CFS Initiative CDC ME/CFS and Long COVID Survey: Solve Takes ActionCDC may remove ME/CFS and Long COVID questions from its national health survey. Learn how Solve is responding and how to submit public comments.