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Category Archives: Topics

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 -- ...

Hannah Bowlus: Fighting Inequality, Finding Power in Community

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  I'm Hannah Bowlus and I’m the administrative assistant at #MEAction. I take care of basic things like mailing t-shirts, archiving and scheduling calls. I talk with a lot of you. The more I get to know this community the more urgent and vital our work feels. I get to see ...

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 ...

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 ...
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 ...

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 ...

Enrolling: EDS Genetics Study

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What: The Ehlers-Danlos Syndrome (EDS) Society is recruiting individuals to participate in a genetic evaluation study. ME/CFS and EDS have a range of similarities and overlap. EDS is a connective tissue disorder in which musculoskeletal pain, joint pain/hypermobility, and fragile skin are considered common manifestations. Who: 1000 individuals with Hypermobile EDS as ...

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 ...

We are building a movement at #MEAction UK. Join us!

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#MillionsMissing - organised by #MEAction - has been such a successful campaign this year, and we thank everyone in the ME community for your part in this. At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London ...

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 ...