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,
My name is Terri Wilder and I’m a person living with ME. I was only diagnosed with ME about twelve weeks ago so it feels a little strange for me to be here today and introduce myself this way…… I typically introduce myself this way: “Good Afternoon, I’m Terri Wilder. I’m an AIDS Activist and a
