The entire mild to very severe scale for ME is tragically misnamed. When “mild” is starting at a 50% reduction in life the word has lost all meaning. It should be more like a severe to diabolically severe scale.
KH
@khvmd.bsky.social
195 followers 160 following 666 posts
pwME since 2018 Veterinarian Pittsburgh, PA USA
![Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.—The
Committee recognizes the urgent need to advance research for ME/CFS, particularly given
its overlap with long COVID and its relevance across multiple Institutes and Centers, and
commends NIH for approving the ME/CFS Research Roadmap and developing an
implementation plan in response to prior Committee direction. Building on this work, the
Committee provides no less than $50,000,000 within the Office of the Director to support
implementation of the ME/CFS Research Roadmap. These funds shall be used to support
new and expanded research activities consistent with the Roadmap’s recommendations,
including but not limited to biomarker discovery, development and validation of diagnostic
tools, and interventional and clinical trials across relevant Institutes and Centers.
The Committee directs NIH to implement the ME/CFS Research Roadmap’s
recommendations and to include in the fiscal year 2028 Congressional Justification a
discrete summary of ME/CFS-related research investments, including projects supported
with these dedicated funds; a description of how Roadmap implementation is being
coordinated across Institutes and Centers; and an explanation of how ME/CFS research
supported under the Roadmap complements and informs NIH’s research on Long COVID,
post-acute infection syndromes, and related autonomic and neuro-immune disorders.
Thank you for your leadership and consideration of this request. With dedicated FY27 support,
Congress can help ensure the ME/CFS Research Roadmap becomes a real vehicle for progress—not
just a plan on paper—and finally move this field toward the diagnostics, treatments, and answers
https://notjustfatiguewebsite.cdn.prismic.io/notjustfatiguewebsite/abJ_fVxvIZEnjmR3_ME-CFS-FY27-Appropriations-Letter-Research-Roadmap-Funding.pdf](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:szc7xq5qv7wg2abye6tlvet2/bafkreibmxaaky2m4py3v2er2434m5syee4hxcqx6elsjsyobgcxvlsqp5a)
