The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability and quality of medical care
Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.
Join SolveCFS for their first advocacy webinar on “6 ways to maximize your congressional impact.” Thurs., March 2, 10-11 a.m. PST SMCI Advocacy and Engagement Manager, Emily Taylor, will lead the webinar, which is the first in Solve’s advocacy webinar series: “Power to the Patients.” To register for the free webinar, go here: http://bit.ly/2ln3dIO
On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ask a question. I asked
U.S.: Join us for a training on bird-dogging with Paul Davis, National Advocacy Coordinator for Housing Works on Sunday, Feb. 19 at 2:30pm E.T. The call will run for 90 minutes. The focus of this training will be on how to speak truth to power and protect (to the best of our ability) the Affordable
U.S. House and Senate members are home in their districts for the month of February. Many will be holding public town hall meetings, tele-town meetings (via phone) or events this month. It’s a great opportunity to speak directly to your congressperson at a public gathering about the urgent need of congressional support for people with ME
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about the planned ME research
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017. #MEAction activist, Terri Wilder, spoke during the comment period at
Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.