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Category Archives: Uncategorized

Mobilize your Medical Providers to Watch Unrest for Credit

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We are so thrilled to announce that US healthcare providers – including doctors, nurses, pharmacists, therapists and social workers – can now watch Unrest and receive continuing education credits through the American Medical Women’s Association and Indiana University School of Medicine, in partnership with #MEAction. Healthcare providers can attend a live, continuing education ...

Karina Hansen is Free from State Guardianship!

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At long last, Karina Hansen is now free from state guardianship! A local court in Denmark released Karina from state guardianship after an independent psychiatrist determined that she does not suffer with any psychiatric illness, understands the role of her state guardian and would like him removed from her case, and ...

Living Deeply in Tiny Rooms

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Here is a question for you:  Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to me lately. They surface when ...

Enrolling: Stanford Neuroinflammation Study

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This study is interested in ME/CFS patients who would classify themselves in the severe category (mostly bedbound, could be housebound). Dr. Montoya and Dr. Michelle James, a neuroradiologist at Stanford University, aim to investigate the inflammatory process in the brain of ME/CFS patients. They believe that this study could lead to improvements in ...

NOW Adopts Resolution for ME

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The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic encephalomyelitis (ME), at its conference this past July. The resolution is now live on NOW's website, read the full resolution below. The resolution recognizes the need to increase research funding, raise awareness ...

Alphabet Soup – Your Guide to Current U.S. Actions

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When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory ...

Beauty Sleeping: A Real Life Fairytale

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Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn't bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and ...

NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

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The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this ...

Advocacy Roundup – Holding Our Institutions Accountable

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It has been a hot summer for many around the world, and another month of courage, resilience and bravery as people with ME continue to demand equitable research, treatments and respect. We continue to fight against harmful treatments and stigma worsening the health of everyone from the newly diagnosed to ...

You Are Lovely.

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Artwork by Elizabeth D'Angelo, who has severe ME. View, purchase and commission her artwork here. People can be infuriating. People can tell you that you are wrong about your own experience. That if only you were braver, bolder, cleverer, or otherwise different you’d be more. Whether the more they have in ...