A preliminary overview of NIH grant funding for ME/CFS research in the funding year 2020.

I’ve tried to make a preliminary overview of (extramural) NIH grants for ME/CFS research for the funding year 2020. The image below provides the shortened version.

The longer version is available in pdf format in the link below. It provides an overview of the grants, a link to the NIH page info, and a short explanation of each study.

Only three new projects were submitted in 2020: Leonard Jason’s follow-up on his cohort of adolescents who experienced mononucleosis, Dikoma Shungu’s study of N-acetylcysteine as a treatment for ME/CFS, and a third one of only 35.000 dollars to help organize the recent IACFS/ME conference.

All the other grants have been submitted earlier, often many years ago. The study by Marshall Vance Williams for example started in 2010, the one by Nacul in 2013, the one by Unutmaz in 2016. 6 out of 11 of the researcher initiated research grants listed above (representing a third of the total funding) end in 2021 or sooner. The funding arrangement for the collaborative research centers runs until 2022 and will need to be renewed then. So I think there’s a danger that funding will decrease in the future if these long-running grants are not renewed fast enough.

Total funding thus far is less than 12 million, with 60% going to the collaborative research centers. The funding for the NIH intramural research into ME/CFS still needs to be added to this amount but last year Avindra Nath’s study only received 0.75 million. So at the moment, it looks like NIH funding for ME/CFS research will be close to 13 million dollars rather than the 16 million the NIH projected.

As noted by Jennifer Spotila, there is a problem that the NIH includes studies in their list of funding for ME/CFS research that aren’t really about ME/CFS. For the year 2019 for example total funding is approximately 15 million but this includes a 2 million dollar study titled “Pathophysiology of Involuntary Movements and Volitional Disorders.” This is a study of – what authors call – “functional (psychogenic) movement disorders”. Only at the end of their abstract do the authors note: “In collaboration with other groups, we are also studying the pathphysiology of mirror movements, ataxia in SCA7, and Chronic Fatigue Syndrome.”​ So probably only a small portion of that grant money goes to actual ME/CFS research.

In 2018 the NIH did something similar by including a study on catecholaminergic neurodegeneration where ME/CFS was only one of the many conditions studied. Probably only a portion of the grant money went to ME/CFS research, while the NIH listed it all under ME/CFS research. There is also an intramural study on fatigue that the NIH lists as ME/CFS research. So it seems that the Institutes are a little too optimistic about the amount of money that it claims to spend on ME/CFS research.

Update: The data on NIH funding in this article have been updated. Someone pointed out that for four grants, the amount of funding indicated in my table was somewhat different from the amount of funding indicated on the NIH project information page. This is a bit peculiar because I used the exact same NIH pages as a source back in October when I made this preliminary overview. As the table below indicates, the difference wasn’t large: in total only 54,304 dollars. Given that this happened for 4 grants and that the difference is very small (in one case only 429 euros) compared to the differences in funding between the grants, I don’t think this was due to a typing or copying error on my part. Perhaps the NIH updated their funding information for some of the grants? If anyone can figure out what might have happened here feel free to make a comment below.

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