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Reflections on the NIH conference: Part 1. Overview

In December 2023, ME Research UK attended a two-day conference organised by the National Institutes of Health (NIH) and titled “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID”.

Our reflections on the topics discussed at the conference are presented in this three-part series of articles.

1. Overview | 2. Research topics | 3. Treatment targets

The last NIH meeting, under the theme of “Accelerating Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome”, was held four years ago in April 2019 – prior to the COVID-19 pandemic and the emergence of long COVID.

The goal of the 2023 meeting was to “present the state-of-the-art science of ME/CFS research and identify targets for potential interventions that have arisen from the literature and clinical evidence from ME/CFS and long COVID observations”.

Overall, the talks given over the two-day period reflected this goal well, and a range of research relating to ME/CFS and long COVID was presented across several different areas including:

Day 1Day 2
The immune systemLong COVID and ME/CFS
VirusesGene regulation
Energy metabolismThe brain and spinal cord

The conference also included presentations from early-career researchers and, importantly, talks from those with lived experience of ME/CFS and of long COVID.

The topics covered included the following:

  • The lack of funding for ME/CFS, and the need to increase research capacity through interdisciplinary collaboration.
  • Consistent evidence of biological abnormalities in people with ME/CFS and in those with long COVID.
  • The need for research which studies ME/CFS and long COVID over time (longitudinal research).
  • The importance of listening to those with lived experience of ME/CFS and/or long COVID.
  • Emerging areas for potential intervention and drug repurposing.

1. Overview | 2. Research topics | 3. Treatment targets

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