Calling all ME activists, allies and advocates. #MEAction is gearing up for some major actions that need your input. Now is a great time to join the conversation to a) shape the structure of your advocacy organization, and b) organize the #MillionsMissing protest for September. Even if you’re not ready to dive in yet but you
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.
The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments
Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking patients and patient advocates to tell the Trans-NIH Working Group on ME/CFS what kind of opportunities there are for studying the illness, what technologies and tests might be utilized in studying it, and what challenges ME/CFS
Based on information from four medical schools, medical schools rarely address ME/CFS in basic instruction or as case studies. The University of North Carolina School of Medicine is ranked second in primary care in the 2017 U.S. News and World Report. Kurt Gilliland, PhD, is its assistant director of curriculum and evaluation. When interviewed, he
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
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
I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum. Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers. Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are
The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week. London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,
My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come here for this protest. October 22, 2006 was a day that my life completely changed forever. I came home from school and I was too ill to hold my head up. It was a similar story
