Research update: The relation between ME/CFS disease burden and research funding in the USA

Work. 2020;66(2):277-282. doi: 10.3233/WOR-203173.


Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an estimated 1 to 2.5 million Americans. It has no widely accepted biomarkers and no FDA-approved treatment. ME/CFS has traditionally been one of the lowest funded diseases by the United States National Institutes of Health (NIH).

Objectives: We provide here an update to our 2016 article, which estimated the disease burden of ME/CFS in the United States in 2013 and its relation to NIH's 2015 analysis of research funding and disease burden. This update incorporates more recent burden data from 2015 and funding data from 2017.

Methods: We perform a regression analysis on funding versus disease burden to determine 2017 funding levels that would be commensurate with burden. Burden figures for 2017 are estimated using population-based extrapolations of earlier data.

Results: We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH's analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.

Conclusions: To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.

Keywords: Chronic Fatigue Syndrome; burden-commensurate funding; disease burden.

MeSH terms

  • Capital Financing / standards*
  • Capital Financing / statistics & numerical data
  • Cost of Illness*
  • Fatigue Syndrome, Chronic / complications*
  • Fatigue Syndrome, Chronic / economics
  • Humans
  • Research / economics*
  • Research / statistics & numerical data
  • United States