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I’m angry, but I’m not alone. 

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I’m angry, but I’m not alone.  Hi, my name is Ben HsuBorger, Director of Global Community and Campaigns for #MEAction, and I’m a person living with myalgic encephalomyelitis for over 14 years. I’m deeply grateful for the community and tribe I’ve found at #MEAction that remind me I’m not alone -- ...

Why the Fight is Personal

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I am so honored to work with the #MEAction community on a daily basis. Our organization is fighting hard everyday to communicate the truth about myalgic encephalomyelitis (ME) - to shout it out loud and clear - to the world. My role as the #MEAction Editor & Communications Manager is ...

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

Introducing #MEAction’s 2019 ME Research Summary

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We are thrilled to announce the release of our 2019 research summary reviewing the most current and important research into myalgic encephalomyelitis (ME) and ME/CFS of the past 10 years. Our research summary provides essential stakeholders with access to a compiled, digestible resource that can help them excel in their respective

Call for Artists! Sending postcards to doctors!

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CALL FOR ARTISTS We’re taking art submissions for our upcoming Postcards to Doctors initiative! Postcards to Doctors will work a lot like Postcards to Voters. The Postcards to Voters campaign leveraged handwritten postcards to individuals in order to encourage them to vote.  Postcards to Doctors will use the same model in

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

As I Age with ME

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By Marianne Granger In my forties I was moving forward fulfilling my drive to be a community organizer/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my

Erin Roediger: Igniting a Fire for ME

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As the U.S. Advocacy Manager for #MEAction, I have the great pleasure of connecting fully to my life’s purpose: to be part of igniting the fire for change in the world. While it took me a while to determine that purpose, this truth has always been a driving force in

Action Alert: Support A Funding Increase for ME!

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We need YOU to contact your Senators. Your voice makes all the difference. Our champion, Senator Markey, led two requests that can increase funding for ME/CFS research! 1) Requesting $9.9 million for ME/CFS programs at the Centers for Disease Control (Labor, Health and Human Services, and Education Subcommittee) 2) Adding ME/CFS to the

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

Why #MEAction is Taking Action towards the CDC on Two Fronts

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#MEAction has announced two CDC-related advocacy actions today and yesterday.  We are asking you to contact your Senators to increase research funding for ME through the Centers for Disease Control and Prevention (CDC), AND we have also published an open letter to the CDC calling them out for insufficient transparency and

Meet the #MEAction Staff: Espe Moreno

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I am delighted to be part of the series in which you are getting to know the #MEAction staff! My name is Espe and I am #MEAction's UK Coordinator. I am so honoured to be a part of the staff at #MEAction. I came to #MEAction via Unrest, as I was

Meet the Staff: Holly Latham

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It is an honor to volunteer and work for #MEAction. #MEAction came to me at a time in my illness when I was finally able to be online, do advocacy work, and find community. To understand why #MEAction’s mission and approach to activism is so important to me, we need
People travelled from all over Scotland to attend #MillionsMissing Glasgow

Hundreds gather for #MillionsMissing Glasgow

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#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly unusual for this Scottish city! A crowd of around 400, many of whom had travelled from across Scotland, heard people with myalgic encephalomyelitis (ME) speak about their experience of the illness.