U.S. House and Senate members are home in their districts for the month of February. Many will be holding public town hall meetings, tele-town meetings (via phone) or events this month. It’s a great opportunity to speak directly to your congressperson at a public gathering about the urgent need of congressional support for people with ME
Want to know more about the research centers and data center being planned for ME/CFS by the National Institute of Health (NIH)? Directors at the NIH discussed the research centers and answered questions from people with ME along with researchers in a phone call on Feb. 2. The NIH will provide $30 million over the
Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always.
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017. #MEAction activist, Terri Wilder, spoke during the comment period at
Government funding for research centers and a data management center for ME/CFS has been made public, and the amount of funding allocated is infuriatingly small. The National Institute of Health (NIH) plans to issue two Requests for Application (RFAs) in January to fund 2-3 collaborative research centers and a data management center for ME/CFS. The
Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May – and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism has continued behind the scenes in follow-up
Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation
Dr. Komaroff’s Webinar Provides His Hypothesis, Hot Research and Hope Link to webinar: https://youtu.be/ENrdrGj0p-c by Darla N. In a webinar the Solve ME/CFS Initiative hosted on Nov. 10, Dr. Anthony Komaroff presented his hypothesis on ME’s cause and five popular areas of current ME research. Komaroff, Simcox-Clifford-Higby professor of medicine at Harvard Medical School and senior
FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)
