Category: Topics

National Disability Voter Registration Week

National Disability Voter Registration WeekJuly 13-17, 2020 #MEAction is excited to participate in National Disability Voter Registration Week!  Let’s get people with ME and all people with disabilities registered to vote, educated about this year’s election, and prepared to cast our ballots! We have gathered resources to help make it as simple as possible as

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ADA 30th Anniversary–Stories Wanted

The 30th of the anniversary of the American Disability Act (ADA) is fast approaching–July 26th. As a way to celebrate this momentous occasion, we are looking to share stories of how the ADA has positively impacted the lives of people with ME.We want to honor those who fought hard to make sure we have the

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Status Update On #MEAction’s Congressional Work

#MEAction’s Congressional Committee team has been very busy this year. We want to give you a status update and alert you to an ongoing action you can pursue. Appropriations Since March of this year, #MEAction, in partnership with the Solve ME/CFS Initiative and MassME/CFS & FM Association, has been working to increase funding for ME/CFS

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Voices from Sacramento: Janet Dafoe and Ashley Haugen

Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.

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Shorter invited to NIH to share perspective of disease denialism

On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the NIH by the historian Dr. Edward Shorter titled “Chronic Fatigue Syndrome in Historical Perspective.” Dr. Shorter has a long history of treating patients with ME with disdain and denial, as illustrated in an article he wrote for

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Tell the NIH about your experience of PEM

Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an

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Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them

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#MillionsMissing US Protesters to Meet With DeSalvo at HHS

A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August.  The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests

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