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
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
1) PUT YOUR SHOES OUT Put your shoes out on your front step, at the end of your driveway, or in a public place to symbolize a patient, a friend or a loved one missing because of ME; consider placing them with a sign to tell the story of just what that person – and
A petition for more biomedical research funding for ME/CFS that was started in January is only 2,000 signatures short of the 10,000 needed to force the UK government to issue a response. The signatures must be gathered by 13 July. The petition is on the UK Government and Parliament Petitions site, where any of the
Hello, everyone! It’s only three days until the #MillionsMissing protest, so it’s time to review what’s gone on so far, and discuss what you can do to help ensure we are heard by our governments! Locations: So, your protest has gone out into the world and is now in a dozen different locations. Locations now
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.
The spring meeting of the US CFS Advisory Committee (CFSAC) will take place on Tuesday May 17 and Wednesday May 18 from noon to 5pm (Eastern Time) and will be both livestreamed and available to listen to by telephone. The committee provides advice and recommendations to the Secretary of Health and Human Services (HHS) on
These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into a national, multi-city protest. With that in mind, we will have an open community meeting on Wed. May 11th, 2 pm EDT to discuss the demands and receive input from the community. We will also be
