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,
Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later
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
The Invest in ME conference in London on Friday, 3 June is the first of three major ME/CFS conferences this year and there are indications that patients may be able to access live updates or recorded presentations from all three. Some audience members attending the Invest in ME conference are expected to report live on
Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our appropriated funds, sort of open to all things within our mission, and if we decided to a priori say we’re going to set aside a pot of money for some particular topic, then we need to
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
I’m Ron Davis and my son is missing… Linda Tannenbaum has really helped us a lot in raising funding. We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research. And we are making progress. Now, it is very
The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the disease during a live webcast at 2pm (Eastern Time) on Thursday 26 May. The broadcast will take place from a meeting of the National Advisory Neurological Disorders and Stroke Council. In order to be funded, proposals
The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.
