NIH Long COVID research lacks clear plan to identify and track ME/CFS

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MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction of people with Long COVID have symptoms consistent with ME/CFS, and many will go on to acquire an ME/CFS diagnosis.

Two technical recommendations we are requesting to be implemented across the RECOVER Initiative are:

  1. use only ME/CFS case definitions that require the hallmark symptom of post-exertional malaise (PEM) and
  2. consistently assess ME/CFS case-defining symptoms across research sites with instruments created by ME/CFS experts.

These actions represent the bare minimum of what is immediately and critically needed to ensure data harmonization and accurate characterization of Long COVID – ME/CFS subgroups.

Failure by NIH (and CDC) to tackle these definitional and methodological issues have significantly hampered ME/CFS research to date. NIH must recognize that they have no choice but to take on the complex challenges of studying ME/CFS as an integral component of the RECOVER research agenda. The consequences of inaction will be to waste taxpayer dollars and further impede research progress, ultimately delaying answers and treatments for people with ME. In our letter, we outline the cascading series of negative impacts that will follow from not doing the necessary work to establish meaningful ME/CFS clinical subgroups within Long COVID.

“hope” is not a course of action

NIH officials have repeatedly assured the ME community that the $1.15 billion Long COVID research initiatives, such as RECOVER, represent a unique “research opportunity” that offers “hope” of scientific breakthroughs for people living with ME. But hope is not a course of action. There is no basis for “hope” if the NIH does not take strategic and specific steps to make this outcome possible.

NOTE: check out these other RECOVER-related recent actions:

  • #MEAction and ME/CFS researchers and organizations sent a joint letter to NIH with ME/CFS recommendations (August 2021).
  • MEAction endorsed Patient Led Research Collaborative’s (PLRC)’s open letter on RECOVER (November 2021).
  • We support the companion proposal by Body Politic and PLRC calling on NIH to implement structures for more meaningful engagement of patient advocates.
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