RFI Archives

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 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

SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

August 2, 2016 2 Comments

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.

#MEAction Policy Change: ME, not ME/CFS

July 24, 2016 4 Comments

The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate

Tag: RFI

Urgent: Take part in the US Congressional Call to Action

#MEAction RFI Poll Report (Part 2 of 3)

SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

#MEAction Policy Change: ME, not ME/CFS