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
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
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.
A Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease. In an interview with British ME/CFS fundraiser Mike Harley, the charity’s representatives stated, “The government appear to take no interest at all in this disease, which means that there isn’t any serious commitment, no sense of urgency whatsoever.” “There currently
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.
#MEAction is excited to announce its first protest in Washington DC! (Now rescheduled for May 25, 2016) Please join us May 25th for a protest outside of the Health and Human Services building in Washington DC. Our goal is to raise the visibility of this illness and the people living with it. Can’t make it to
On March 21st, the brave Bolivian AKIPerDis protestors began their 265 mile journey by wheelchair through the Andes mountains to capital La Paz to demand equality and livable disability pensions. The group has already come face-to-face with adversity in many of its forms in the roughly 100 miles that they’ve traveled since the 21st of March. Amidst death
