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.
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
Dr Kenneth J. Friedman will discuss the CFS Advisory Committee’s (CFSAC’s) upcoming proposal for ME/CFS Centers of Excellence and will explain what patients can do to make such centers a reality, in an online TV panel show on May 12. The one-hour show, which covers ME/CFS and Lyme Disease, will be broadcast on Channel 17
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
#MEAction proudly announces the launch of its #MillionsMissing Zazzle Store! You can purchase #MillionsMissing tee shirts and buttons for the upcoming protest on May 25. We encourage protesters to wear them to the event as well, to create a visual cohesiveness. However, you are welcome to wear a red shirt of your choosing, or any
Many of us have already seen and signed Mary Gelpi’s petition asking the NIH to increase its research budget for ME/CFS funding to $100 million. Her groundbreaking petition has already netted 27,000 signatures as of this post. In Mary’s own words: I am only 31, and yet, everyday things like taking a bath exhaust me.
The Blue Ribbon Foundation will have this offer available until May 19th, and will send out all orders on May 20th to reach the state representatives’ desks on or by May 25th, in a virtual protest. If you are not able to physically attend either of the protest sites, this is an excellent opportunity to make your voice heard.
