Author: #MEAction

Coming Out of the Closet

Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.

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

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.

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

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  

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Letter to NIH: End the Insult

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.

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

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.

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U.S.

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

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Congress is home & hosting public meetings

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

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