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Category Archives: United States

HOMELESS: How AMMES is Keeping People with ME in their Homes

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Listen to the article:   Erica Verrillo is President of the American ME and CFS Society (AMMES) | Photo by ALACHUA COUNTY /Flickr CC BY 2.0 Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was ...

HUGE Event for ME in Boston

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Follow Rivka Solomon on Twitter: @RivkaTweets "Now that's the kind of event that gives hope. Real hope. Tangible, actionable hope. It's infuriating that the standard of "care" for #Millions Missing is mostly built on disinformation. This kind of event is how we change this mad injustice." - @RichardVallee on Twitter Every now and ...

Apply to Attend the NIH Conference with a Scholarship from #MEAction!

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#MEAction is currently accepting applications from medical students and practicing medical professionals to attend the National Institutes of Health meeting on myalgic encephalomyelitis (ME) research on April 4th-5th, 2019 in Bethesda, MD. The application is due at 5 p.m. EST on February 22nd. The goal of the meeting is to showcase high-quality studies to better understand the state of ...

Register Now for ME/CFS Advocacy Week 2019!

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Listen to the article:  #MEAction and Solve ME/CFS Initiative (SMCI) are excited to announce a joint partnership for ME/CFS Advocacy Week & DC Lobby Day 2019!  The week of meetings with representatives, call-in actions and online events will take place from Monday, April 1 to Sunday, April 7th. The keystone event, Lobby Day 2019, ...

How to Represent ME at the Women’s March

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#MEAction Colorado is organizing a small cohort to join the Women’s March in Denver this Saturday, Jan. 19th. (See details.) We plan to walk the shorter, ADA-friendly route with empty wheelchairs displaying signs that say, “Too ill to be here,” listing names of Colorado people who cannot participate due to ...

Enrolling: NIH Focus Group on PEM

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Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it. Who: The study is run out ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...

#MEAction Responds to NIH

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As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of ...

Advocacy Round-Up: End-of-Year, 2018

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Our community's advocacy work end with a big finale with our meeting with the director of the U.S. National Institutes of Health (NIH)!  Catch up on the latest global news from the past few months. U.S. NIH #MEAction representatives met with the National Institutes of Health (NIH) director, Dr. Francis Collins, and other ...

Community Roundup – End-Of-Year, 2018

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As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austria Austrian broadcast station ...