Opinion: NIH must address the twin crises of long Covid and ME/CFS — together

The National Institutes of Health is at a crossroads with the RECOVER Initiative, its flagship program to address long Covid. Designed to provide answers and treatments for the millions suffering from long-term effects of SARS-CoV-2 infection, the initiative has already received significant criticism for failing to prioritize the needs of patients and advance meaningful clinical trials. Now, as Congress, the scientific community, and advocates call for the inclusion of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) within the RECOVER framework, NIH has an historic opportunity to transform post-viral illness research.

For one of us, Elizabeth, this debate isn’t abstract. After graduating from a top university and starting a successful career in TV production, she developed severe ME/CFS that ultimately left her unable to speak or move for years. Her experiences — from questioning whether she’d be able to speak again, to being diminished by doctors who were unable to properly diagnose her — are unfortunately common for people with ME/CFS. For others, ME/CFS may mean losing the ability to work, raise their children, or live independently. They are often left isolated and dismissed by a health care system unprepared to treat or even recognize their condition. Many are too disabled to advocate on their own behalf.

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