By David Tuller, DrPH
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April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/37217
Each year, the US National Institutes of Health publishes its
“estimates of funding for various research, condition, and disease categories.” These estimates are provided in a lengthy table with the figures calculated “based on grants, contracts, and other funding mechanisms used across the National Institutes of Health.”
For many years, the amount reported to be spent annually on what was being called chronic fatigue syndrome (CFS) was minimal—around $5 million, much less than for many illnesses impacting far fewer people. After 2015, that number tripled to reach $15 million by 2017 and rose to $17 million in 2021.
On March 31, the NIH
released the figures for how much was spent in 315 categories during fiscal 2022. The amount identified as having been allocated for research into CFS—which it now also calls ME/CFS—fell to $13 million. That’s close to a 25% reduction. The NIH projects the amount to remain flat at $13 million for the next two years.
Jennie Spotila, a longtime ME advocate and author of
the blog Occupy ME, has regularly analyzed NIH spending claims and found that they seem to overstate the amount dedicated to the relevant illness. As she wrote in
her report about 2020 spending:
“Every year, NIH publishes its internal calculation of how much it spent on research…These numbers are generally accepted as accurate and authoritative by Congress and the public alike. Over the years, however, I have found that the reported amount for ME/CFS does not stand up to closer examination.”..........................................
