Category: NIH

NIH Extends Funding for ME/CFS Research Centers

The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research awards for the ME/CFS Collaborative Research Centers (CRC) and the Data Management and Coordinating Center (DMCC). The currently-funded research centers which apply, and are approved, for another 5-year term will no longer face a 7-month funding

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Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

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NIH Comes up Short Once Again

No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K

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

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

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#MEAction’s work in the Forest of Federal Agencies

Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies as we surpassed our first fundraising level of US$15,000/UK£11,178. While this fundraising adventure is all about putting the FUN in Fundraising, the work #MEAction has done within US Federal Agencies has been imperative to improving the

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Is NIH blowing another opportunity to advance ME/CFS research?

Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed

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NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

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Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.  Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

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#MEAction urges Congress to hold NIH accountable

#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID.  Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to

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NIH & CDC leadership are failing people with ME/CFS

#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective

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