Category: Patients

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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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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Facets of ME: Cognitive Dysfunction

Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of ME to dive into and explore more in-depth once a month. Our goal is to keep it understandable while still providing a great overview and links to even more detailed information.  The facet of ME that

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Facets of ME

We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the multiple facets of ME/CFS including symptoms, comorbidities, practical tips, and more. Our goal is to take the first Friday of each month and delve into one particular facet of ME in a way that is easy

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Medieval Town of Med-Ed Featured Image

#MEAction Arrives in the Medieval Town of Med-Ed

Here’s a hearty hello from the Medieval Town of Medical Education!  Lords and Ladies,  We did it!… we got over $75,000 (£56,781) which means we have arrived at this new land on our Giving Adventure Map. I’m Laurie Jones, the Managering Elf, and I am going to tell you what awesome stalls await you at

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