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

Summary & key facts

This update looked at how much sickness ME/CFS causes in the U.S. and compared that to NIH research funding in 2017. The authors estimated ME/CFS burden using earlier estimates and population growth. They found ME/CFS causes a large health burden—about 0.73 million DALYs in 2017 by their estimate—but receives far less NIH funding than would match that burden. They estimate NIH funding for ME/CFS was only about 7% of a burden-commensurate level, meaning funding would need to rise about 14-fold to match the disease burden. The authors note this burden estimate is preliminary because of limits in the underlying data.

Key facts:

• ME/CFS is estimated to affect about 1 to 2.5 million Americans.
• The authors’ 2013 DALY estimate for ME/CFS was 0.714 million; scaled for population growth to 2017 this is about 0.733 million DALYs.
• By their comparison, ME/CFS has about twice the disease burden of HIV/AIDS and just over half the burden of breast cancer.
• In 2017 NIH funding for ME/CFS was about 7.3% of what the authors calculate would be commensurate with its disease burden.
• To reach funding commensurate with the estimated burden, the authors estimate NIH funding for ME/CFS would need to increase roughly 14-fold.
• Between 1995 and 2014, NIH funding for ME/CFS averaged about $5 million per year, placing it near the bottom of diseases funded.
• The paper cites other impacts: as many as 75% of patients may be unable to work, 25–29% may be homebound or bedbound, recovery is estimated at about 5%, and ME/CFS-related costs to the U.S. economy are estimated at $18–24 billion per year.

Abstract

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

Topics

Fibromyalgia and Chronic Fatigue Syndrome Research

Categories

Health Sciences Medicine Psychiatry and Mental health

Tags

Burden of disease Computer science Data mining Disease Disease burden Gerontology Medicine Pathology Political science Relation (database)

Conditions & symptoms

Chronic Pain Sleep disorder Chronic pain Lack of energy or motivation Poor sleep