United States Archives

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

March 29, 2017 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 to sponsor

IL. House of reps shows support for ME

March 25, 2017 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 and quality of medical care

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

March 20, 2017 8 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, having ME. It

The Cut

March 20, 2017 No Comments

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.

Video: How to protect American healthcare

March 10, 2017 3 Comments

Housing Works is mobilizing people who want to fight for health care. Housing Works provided this webinar last month on how to protect and improve healthcare in the U.S. using a tactic called “bird-dogging.”

Free Webinar with Dr. Peter Rowe, director of Chronic Fatigue Clinic

March 10, 2017 No Comments

Solve ME/CFS Initiative (SMCI)‘s first webinar of the year, “A Clinical Approach to ME/CFS in Adolescents and Young Adults,” will be held with Peter Rowe, M.D. next Thursday, March 17, 2017. To register for the free webinar, go here: https://attendee.gotowebinar.com/register/7209349689868350723

SF Bay Area: Get Stanford Some Healthy Controls!

March 7, 2017 2 Comments

If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis‘s ME/CFS research. If you know individuals who are happy to help

NIH funding: What will this mean for ME/CFS research at Columbia's CII?

March 2, 2017 3 Comments

If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses; it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.

Letter to NIH: End the Insult

March 1, 2017 21 Comments

A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.

Thank Senator Markey for promising to help ME patients

February 26, 2017 16 Comments

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

Category: United States