Why Did the NIH List an Award for Research on Cancer-Related Fatigue in Its List of Spending on ME/CFS?

By David Tuller, DrPH
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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.”

That also appears to be the case this time around. The 2022 list of awards includes 23 projects. (To see the list, click on the dollar amount for CFS in the column for 2022; the page does not have its own URL.) 

Most of the projects were clearly targeting ME/CFS, and most of the awards were well under a million dollars each. Many went to well-known researchers in the field. For example, two of the awards, for a total of more than $750,000, went to Leonard Jason, a psychology professor at DePaul University in Chicago, for his prospective study of college students who developed ME/CFS after mononucleosis. Stanford’s Ron Davis and Eliana Lacerda, at the London School of Hygiene and Tropical Medicine, received, respectively, $696,000 to study molecular and cell immunology and $532,000 to study the role of human herpesvirus 6B. 

But the largest amount by far—$3.6 million—was designated for a project called “Investigating Correlates and Therapeutics of Fatigue.” (This issue was discussed on the Science for ME forum here.) 

The link to the project provided on the NIH site yields this statement: “This project doesn’t exist in RePORTER yet. Please check your query or check back after the start date.” But investigator Leorey Saligan is a specialist in fatigue related specifically to cancer and cancer treatments based at the National Institute for Nursing Research. Since 2013, he has been conducting a project called “Investigating Correlates and Therapeutics of Fatigue in Cancer Patients,” according to another grant page on the NIH site. (The issue was discussed on the Science for ME forum here.) 

Here’s a description of the research from that grant page:

“The research team is actively recruiting participants for their studies that investigate the molecular-genetic correlates, as well as possible therapeutics of cancer-related fatigue. Recruitment was conducted by self-referral, referrals from other National Cancer Institute providers, and/or from the Patient Recruitment and Public Liaison Office. The PI is working closely with collaborators from the Multidisciplinary Prostate Cancer Clinics of the National Cancer Institute to improve recruitment of interested individuals. There is an increased inquiry from both patients and investigators from NCI about the protocol.”

Assuming this is the project for which the NIH provided the $3.6 million listed as part of the $13 million purportedly spent on CFS and ME/CFS, it is unclear why it was included in that category. Clearly, money spent on fatigue related to cancer and cancer treatments is not money spent on CFS, ME/CFS or ME–and it is not relevant either. Beyond that, money spent on fatigue per se—whether cancer-related or not—is also not money spent on CFS, ME/CFS, or ME. 

Perhaps the NIH has a reasonable explanation for why this project appears on this list of CFS and ME/CFS research. From the outside, it doesn’t look kosher.

(Anyone who doesn’t know the history of accounting shenanigans in this domain at federal health agencies should read Osler’s Web, Hillary Johnson’s prodigious history of the illness.)