Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease. The request, made in May, drew public responses from Dr. Ronald
Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &
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.
On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS. We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland. Impromptu shoe displays
Name/Nom: William A. Downey, BA, BSW Province: BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who
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
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
Belfast, Ireland and Bergen, Norway will be joining their voices to the #MillionsMissing protest this June. In Belfast, shoes will be displayed at the Chasing Competent Care conference on Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards Road, BT4 3LP Belfast. The shoes will be displayed down the side of
#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016 “Okay awesome. Wow this is amazing. As soon as I pulled up to the square here I just started sobbing because I have been waiting in some sense ever since I got sick for this moment to be together here today
On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global day of action to demand equal treatment and an end to the stigma of the diagnosis of ME/CFS. Protesters demonstrated in front of Department of Health and Human Services offices in Washington D.C., Atlanta, Boston, Dallas,
