Category: #MEAction Projects

Dept. of Labor Updates Information on ME/CFS for Workers, Employers

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace outcomes. At #MEAction’s recent meeting

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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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Mayo Clinic logo on a open laptop screen

Exciting news about Mayo Clinic!

We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research and improved community engagement for people with ME! They reached out to us because they were interested in engaging with a national patient-led organization with strong

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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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#MEAction Continues to Get Press for ME

#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today, North Jersey, New York Times, Infection Control Today, Times-Herald and Well+Good, all in the last few weeks!  Our press reach continues to focus on multiple audiences, including scientists and medical practitioners, the disability and chronic illness

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NIH Comes up Short Once Again

No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K

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