Category: Patients

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Protecting the Most Vulnerable: Complexities of Vaccines and Chronic Illness

It has been over a year since the COVID-19 vaccine became available, and a subset of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are reporting adverse effects from getting vaccines and boosters from all manufacturers. There are also rare reports of people without pre-existing conditions developing Long COVID and ME/CFS symptoms after getting

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Facets of ME: Travel Tips

Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where we take time to explore one facet or aspect of myalgic encephalomyelitis (ME/CFS). Sometimes it is a symptom and sometimes it is a unique aspect many of us face living with ME. So far we have

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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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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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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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New Volunteer Leadership Program Led by Experts!

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

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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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