Category Tag: NIH

US: Read Lily Chu’s CFSAC Testimony

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Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public ...

Send TGIF Letters to Francis Collins

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Friday Letters to Francis Collins ...

21st Century Cures Act Passes House with Overwhelming Bipartisan Support

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21st Century Cures Act Passes House with Overwhelming Bipartisan Support ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a ...

#MEAction US protest demands

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These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the ...

Thoughts on NIH speakers from Dr. Zaher Nahle

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It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written ...

The NIH Will Issue Two New RFAs for ME Research

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It has been nearly five years since the National Institutes of Health (NIH) last released a funding opportunity for Myalgic Encephalomyelitis (ME) research ...

Tell the NIH about your experience of PEM

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Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS ...

Director Collins responds to 55 Congressional Representatives’ Letter of Concern

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Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions ...

Fiscal Year 2016 Request for Applications Tally

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Despite advocates' expectations, Fiscal Year 2016 ended with no RFAs issued for ME research ...

Dozens of US representatives support letter to NIH for ME/CFS research

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A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH's plans for ME/CFS research through 2018. The letter ...
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