Category: #MillionsMissing

A red graphic with white text along the bottom that says ‘Ask your MSPs to join us at Millions Missing Scotland!’ On the left is an icon of a laptop and the email @ symbol, with three yellow envelopes floating out of it. On the right is a photo in a white frame of a group of people outside the Scottish Parliament building, from the protest in 2017. They are wearing red ME Action t-shirts and holding posters and banners about ME. Some are standing and some are sitting in wheelchairs. A person in the centre is holding a microphone.

Ask your MSPs to join us at #MillionsMissing Scotland

Whether or not you can join us in person at this year’s #MillionsMissing, you can help to make it a success by emailing your MSP and asking them to come out, say hello and sign a pledge to support people with ME. #MEAction Scotland will be outside the Scottish Parliament to engage with as many

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#MillionsMissing: 7 Days in Self Portraits with ME/CFS

After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below. Click on any of the

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#MillionsMissing: Videos Created by our Amazing Community

This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a small sampling of the amazing videos that were shared with us. It would be impossible to include them all, but we thank you all for sharing! Chronic — Maggie Borgen M.E. & Friends — Lisa Walker

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#MillionsMissing MAY 2022 Wrap Up

Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other institutions can respond fully to the crisis of ME, Long COVID and other complex, chronic conditions. As Omar Wasow said in his #MillionsMissing speech, “We are at the cusp of newfound power.”  “That has the potential to

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Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

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#MEAction Meets with the Department of Labor

#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL

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Elevating stories of the #MillionsMissing to HHS leadership

#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of Health and Human Services (HHS). We continue to fight for our government to do more to meet the needs of people with ME, and to ensure that the evolving Long COVID federal response includes ME/CFS.  Read

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#MEAction Presents: Not Going Quietly Screening & Panel

We have a very exciting opportunity to come together and watch the award-winning documentary Not Going Quietly. We also have an amazing live panel set up to discuss it with us immediately afterwards. Terri Wilder will be moderating and she shares her enthusiasm with us in this short video: Get Your Tickets Here We can

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An Update from #MEAction

#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past six years, as led by our visionary co-founder and first executive director, Jen Brea, and then by our current executive director, Julia Miele, over the past year. Julia has helped our growing organization streamline our processes,

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#MillionsMissing 2022 Will be in Two Parts

This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing is about demonstrating our community’s collective refusal to let the stories of people with ME be erased, or access to healthcare and medical research blocked. We protest against all barriers to justice for the growing community

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