United States government Archives

Increasing Efficacy of the CDC’s ME/CFS Educational Program

October 13, 2016 4 Comments

INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) educational program. The hope is that this fourth try at producing ME/CFS educational materials will result in equality of care for ME/CFS patients and they will, for the first time, experience appropriate care throughout

Fiscal Year 2016 Request for Applications Tally

October 12, 2016 1 Comment

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

SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA

October 11, 2016 1 Comment

FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)

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

September 9, 2016 14 Comments

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

Tribunal orders release of PACE data

August 16, 2016 6 Comments

A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the

#MEAction RFI Poll Report (Part 3 of 3)

August 15, 2016 3 Comments

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 : [email protected] Germany Daniel Hattesohl: [email protected]

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.

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