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Category Archives: United States

Congressman Jack Bergman becomes Champion for ME!

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Up with the Marines! We are so pleased that Congressman Jack Bergman (R, MI-1), a former Marine general, has become a champion for people with myalgic encephalomyelitis (ME). Michigan advocates led by Lori Chapo-Kroger, RN, president of Pandora Org, and supported by the #MEAction Congressional team, did a video conference ...

Jaime Seltzer: Science Makes the Impact

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People with ME are an incredibly science-literate patient population, even if that isn’t by choice: it’s the gaps in research and clinical care that have made us experts by necessity. Many of us eagerly participate in studies and engage in science discussions online. We regularly present our clinicians with new ...

We need Effective, Strategic, and Respectful Engagement from CDC

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On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME community. The need for change in the CDC’s stakeholder engagement meetings has been a long time coming. However, this Monday, the majority of the call was a presentation comprised of simple ...

Thank The Senate Resolution Co-Sponsors!

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Thank The Senate Resolution Co-Sponsors! This past weekend we celebrated the passing of the bipartisan Senate Resolution, S.Res. 225, in honor of International ME/CFS Awareness Day. Now is the time to thank the lead sponsors, Senator Markey and Collins, plus the other 13 Senators who co-sponsored this historic resolution!!   Two Ways ...

Meet the #MEAction Staff: Laurie Jones

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Meet the #MEAction Staff! Over the next couple of weeks, the staff at #MEAction will be sharing their experiences and insights into what they do and what brings them to this work. I am so thankful for this opportunity for you all to get to know this amazing group of people ...

Historic Congressional Resolution Passes for ME!

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Senate Resolution passed! This is a great victory for all people with ME ...

Read #MEAction’s Request for Information response to the NIH

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The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis.   With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on ...

Enrolling: Stony Brook University ANS Study

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Who:  Researchers at Stony Brook University-- funded by the National Institue of Health What: The goal of this study is to use data obtained from participants to compare the relationships between fatigue, physical activities and autonomic function (heart rate variability). Individuals with ME/CFS as well as healthy controls are needed. Those who ...

South Carolina Raises Awareness about ME

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My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, ...

Urgent – Contact Your Senators Now to Co-sponsor the ME/CFS Awareness Day Resolution

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***UPDATE: THIS ACTION IS NOW OVER***   Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness Day Resolution NOW! Although the original co-sponsors would like to receive sign-ons as soon as possible and ideally by COB Wed, May 8th, they’re willing to accept co-sponsors up until the passage of the bill, ...