NIH ME/CFS Inpatient Study Findings Released, to Mixed Reception

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Last Updated: 05 March 2024 05 March 2024

NIH ME/CFS Inpatient Study Findings Released, to Mixed Reception

As many in our community are aware, the findings of the ambitious inpatient study of ME/CFS at the NIH were published in late February in Nature Neuroscience. This study, which took eight years and $8 million, studied only 17 participants who had ME/CFS for less than five years. Enrolment had to be limited due to the pandemic, and the study chose to not enroll patients with longer-term illness in order to eliminate deconditioning as a factor.

The reception of the study’s findings by ME/CFS organizations and researchers have been mixed. There has been positive response to the finding of chronic activation of the immune system, as well as measurable abnormalities in the brain, blood vessels, the gut microbiome, and energy metabolism. Despite the study’s small size and limitations, the depth and range of testing – taking place over two weeks of inpatient residence at the NIH in Bethesda – was historically significant. We thank the NIH researchers involved for their diligence and dedication, and we particularly thank the people with ME/CFS who gave their time and risked their health to participate in the study.

However, we agree that post-exertional malaise (PEM), the signature symptom of ME, was not well integrated in this study, with a 1-day CPET test being administered rather than the 2-day CPET. And MassME joins other organizations and researchers in deploring the study’s prominent use of the term ‘effort preference’ in their characterization of fatigue, and encourage the study’s authors to amend the paper or publicly clarify their of the use of this term to avoid less-than-careful readings that might lead to continued psychologizing of this illness.

If you want to read further reactions to the NIH study we recommend the response statement from the Bateman Horne Center and corresponding coverage in Medscape, Anthony Komoroff’s summary in Harvard Health, David Tuller’s interview with MGH researcher Mike VanElzakker, and coverage by the NYT and Scientific American.