#MEAction, Author at #MEAction Network

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.

Join the webinar tomorrow: 6 Ways to Maximize Your Congressional Impact.

March 1, 2017 No Comments

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

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.

Living with a Spouse who has ME/CFS – webinar series

February 23, 2017 10 Comments

The Bateman Horne Center is honored to host a free, two-part discussion panel program: “Living with a Spouse Who has ME/CFS and Fibromyalgia.” Part 1 will feature husbands whose wives are ill and part 2 will feature wives whose husbands are ill in an open discussion about an often difficult subject.

Is SIRS, CARS, MARS – and now PICS – causing the "CHAOS" in ME/CFS?

February 20, 2017 9 Comments

Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)?

Host a dinner to fundraise for ME/CFS researchers

February 15, 2017 No Comments

“Dining for Dollars” is a fund raising idea from the AIDS era and we hope to spread the idea by posting the results of our own dinner held this past weekend.

U.S.

February 8, 2017 6 Comments

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

Congress is home & hosting public meetings

February 5, 2017 3 Comments

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

pwME to NIH: People with ME are Being Murdered by Neglect

February 3, 2017 16 Comments

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

ME Activist Basics: Bird-Dogging and YOU!

February 2, 2017 5 Comments

Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday. Never heard of bird-dogging? Bird-dogging is a strategy used by activists who seek out elected officials, pin them down with

Author: #MEAction