Fiscal Year 2016 Request for Applications Tally
October 12, 2016
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Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.
Tag: NIH
Dozens of US representatives support letter to NIH for ME/CFS research
September 9, 2016
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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 was co-sponsored by Rep. Zoe
Urgent: Take part in the US Congressional Call to Action
August 25, 2016
15 Comments
#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren
#MEAction RFI Poll Report (Part 3 of 3)
August 15, 2016
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This is the third article in our series on the #MEAction RFI polling data. Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due
#MEAction RFI Poll Report (Part 2 of 3)
August 12, 2016
24 Comments
This is the second part of the RFI Poll Report. To see the Part 1, click here. The Need for an Inclusive Model of Research Severe patients The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant
Global: RSVP for #MillionsMissing around the world!
August 3, 2016
5 Comments
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to determine where protests are happening near you, how to register, and who to contact to learn about the #MillionsMissing protests happening around the world. Canada Elizabeth Sanchez and Scott Simpson : millionsmissingcanada@gmail.com Germany Daniel Hattesohl: danielbrh@posteo.de
SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding
August 2, 2016
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On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.
Ask NIH to fund an Ampligen Trial Today!
June 23, 2016
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Join our response to the NIH Request for Information: we seek NIH funding for ME/CFS clinical trials starting with Ampligen as the closest medication to approval for our disease.
#MillionsMissing Meets With Government Officials
June 6, 2016
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In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands: better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker
Respond to the NIH's Request for Information
June 6, 2016
3 Comments
On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.” The Trans-NIH ME/CFS Working Group