Category: United States

We need Effective, Strategic, and Respectful Engagement from CDC

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 lifestyle advice for ME, including

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Thank The Senate Resolution Co-Sponsors!

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 to Show Your

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Meet the #MEAction Staff: Laurie Jones

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. They are so ready

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

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 information conveyed in

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South Carolina Raises Awareness about ME

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, minimal medical

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Career and Loss for People with ME

[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I miss teaching. I miss making a difference.[/pullquote] Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from people’s lives. People with ME may struggle with their identity through the loss or great change in their careers. Below are stories of individuals who found their careers

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#MEAction Medical Travel Scholarship Award Winners

#MEAction Medical Travel Scholarship   Because of the generous donation from a private family foundation, #MEAction has been able to provide travel scholarships to medical practitioners and medical students to attend the National Institutes of Health conference on ME this Thursday and Friday.   The goal of the meeting is to showcase high-quality studies to

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What A Day…

What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited to partner for this year’s Advocacy Day and we were blown away by everyone’s response and involvement. With over 200+ people registered to attend in person and even more of you taking action from home, we

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