Category Archives: United States

Thank Senator Markey for Sponsoring the Congressional ME Briefing

/ by / 0 Comment
Back in February 2017, Senator Ed Markey (D-MA)  publicly announced at a packed town hall meeting that he would advocate for ME. A few short months later, he did just that! His first act as an ME advocate was to sponsor a Congressional Briefing on Capitol Hill on May 18th ...

City Proclamation for ME: How-To Guide and Case Study

/ by / 0 Comment
Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME advocate, Mark Camenzind, took for getting city proclamations for ME. Below the steps is a template you can use for your own city proclamation. Feel free to adapt either for your city's ...

State Resolution for ME: How-to Guide and Case Study

/ by / 0 Comment
Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get a State Resolution for ME passed in their State House (aka State Assembly or State Legislature). It also includes a draft template of a resolution for you to use in your state. Why ...

Impact of proposed NIH and CDC cuts on ME Research

/ by / 0 Comment
How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease ...

The Sleepy Girl Guide to Social Security Disability (U.S.)

/ by / 1 Comment
Renegade disability guide for Myalgic Encephalomyelitis ...

Engaging People with ME as Partners in the CRCs

/ by / 0 Comment
The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in ...

IL. House of reps shows support for ME

/ by / 3 Comments
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 ...

URGENT Congressional Action: Ask your House Rep. to sign letter for ME

/ by / 8 Comments
  URGENT Congressional Action! Ask your House representative to sign a letter that inserts favorable language for ME into the House Appropriations Committee report on the FY18 budget.  Deadline to sign: Tues., April 4th. Contact your House rep. today! See instructions for calling and emailing below. ~ U.S. House Representatives Zoe Lofgren and Anna Eshoo have agreed ...

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

/ by / 7 Comments
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through, ...

The Cut

/ by / 0 Comment
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, ...
Menu