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
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.
An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government health bodies for repeating AIDS history by “doing nothing” for millions of ME patients. Terri Wilder, from New York, provided testimony at the CFS Advisory Committee (CFSAC) meeting on 18 May. Terri stated that her testimony
Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture. Its mate is missing, as is so much of my former life. I got all teary-eyed and found myself just touching the shoe ,and as my fingers ran over the sides my memories came flooding back.
I’m running my sixth EU marathon in Stockholm, Sweden on June 4th for biomedical ME research projects via Invest In ME (UK) and would love to meet up with anyone able to come cheer me on or meet for photos and a chat. I’m running to try to help one of my oldest friends, Ian,
