Category: Community

Facets of ME: Temperature Dysregulation

Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.

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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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We can’t believe it! Another $50k matching gift!

I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)! Donate Now Here are three ways you can help us maximize this matching gift: Donate  Start

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Email Doctor Unger about the Misinformation at CDC

People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). The invited speaker at May 13th’s CDC Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing the #MillionsMissing yet again! Information

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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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Word: #MEAction Scotland: First Community Call with an image of a laptop showing a video call with 10 people of different ages, races and genders. In the background to the right of the laptop is a green plant and in the foreground in soft focus is a white hand holding a blue mug.

#MEAction Scotland holds its first community call

Last week, #MEAction Scotland volunteers held the first in a series of community calls. The online meetings will take place quarterly and have been set up to connect us with more people with ME and allies across Scotland. Our first call was a success! We were delighted to be joined by a mix of old

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You can Still Help Madeline!

“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe Myalgic Encephalomyelitis (ME) and fibromyalgia. Madeline  lives in British Columbia, Canada and she urgently needs your help. There is a need to seek alternative medical treatments due to the lack of coverage for treatments within the

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lack History Month

Black History Month

In honor of Black History Month, #MEAction has gathered a collection of articles, videos, and groups that features Black members of our community. We are also sharing links to articles and videos that explore the importance of Black disability history. We invite you to celebrate and honor the contributions of these Black leaders in our

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