Category: All News

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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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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Call-to-Action for CA State Chapter

Call-to-action for California: Centers of Excellence

We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long COVID, but your help is needed NOW. #MEAction and the Patient-Led Research Collaborative have put together a proposal that calls for the State of California to appropriate $120 million for Centers of Excellence in Long COVID along

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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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ME/CFS on TV (Part 3)

RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada Da Ros Through sundry television spaces (news, fiction, talk shows), the ME/CFS community challenged existing political, medical, and philosophical approaches to the illness (and to maladies in general).  The community sought to re-appropriate the discourse, fight

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The Virtual Choir is Back — Submissions now Open!

We are excited to announce that submissions are now open to join our next virtual choir! We have so enjoyed sharing your lovely voices with the world, so we had to bring it back for this year’s #MillionsMissing MAY. This year, the song we will be singing is True Colors as performed by Anna Kendrick

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