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
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.
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.
Dr Charles Shepherd of the ME Association has announced that the UK’s ME/CFS Biobank is now ready to send blood samples to researchers anywhere in the world. The biobank is run by a team headed by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine and forms part of the main University
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
This year’s conference of the International Association for CFS/ME (IACFS/ME) in Fort Lauderdale, Florida on 27–30 October will include speeches by Dr. Walter Koroshetz and Dr. Øystein Fluge. Dr Koroshetz, who is Director of the National Institute of Neurological Disorders and Stroke and head of the Trans-NIH ME/CFS Working Group, will give the conference’s keynote
