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Facets of ME: Temperature Dysregulation
Learn more about temperature dysregulation in this month's #FacetsofME feature.
Jun 23, 20227 min read


#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.
Jun 21, 20227 min read


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recent meeting with ODEP we notified them that their informational resource on “Chronic Fatigue Syndrome” was out of date and
Jun 21, 20222 min read


U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection - despite all the evidence that shows they can and do. And ME/CFS cases don’t show up in research using electro
Jun 13, 20222 min read


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)!Here are three ways you can help us maximize this matching gift:1. Donate 2. Start a fundraiser on Facebook or through our website3. Share this email with friends and familyYour support of #MEAction will allow us to continue the vita
Jun 6, 20223 min read


Email Doctor Unger about the Misinformation at CDC
People with ME deserve accurate ME/CFS education from the Centers for Disease Control, not discredited recommendations for CBT and GET.
May 27, 20223 min read


#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!
May 26, 20221 min read


#MillionsMissing MAY 2022 Wrap Up
Thank you for illustrating our common thread so that our governments and institutions can respond to this health crisis.
May 25, 20225 min read


New T-Cell Research at the University of Massachusetts
#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr. Anna Gil, PhD, recipients of an R01 grant to research immune system dysregulation in people with ME/CFS. Selin, a professor of pathology and a person with ME herself, and Gil, a viral immunologist, comprise the two-person Selin lab at the University of Massachusetts T.H. Chan Medical School. Selin and Gil’s primary area of study involves T cells, white blood
May 18, 20223 min read


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 community ties.Mayo Clinic is a leader in clinical care in the United States. Many healthcare providers in the US and beyon
May 17, 20221 min read


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 anyone who wants to work with us, become an activist with us, or provide support for a growing community. We are so privileged to have Chi
May 10, 20223 min read


Facets of ME: Loneliness
Welcome to April’s #FacetsOfME where we will focus on loneliness and how this illness affects our need for connection and relationships.
Apr 8, 202218 min read


Facets of ME: Cognitive Dysfunction
Learn more about cognitive dysfunction in this months #FacetsofME feature.
Mar 10, 20228 min read


Facets of ME: Post-Exertional Malaise
When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).
Feb 2, 20224 min read


Facets of ME
When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).
Feb 2, 20221 min read


NIH Long COVID Research Lacks Clear Plan to Identify and Track ME/CFS
#MEAction has written to the NIH expressing our deep concern over the RECOVER Initiative.
Jan 14, 20222 min read


Telebriefing was a Success!
Experts at the #MEAction briefing linked long COVID to myalgic encephalomyelitis (ME) and urged NIH to research both conditions together.
Mar 29, 20213 min read


New ME education module available for healthcare professionals
A new education module designed to teach healthcare professionals about ME has been released. Send the new module to your GP, using our email template.
Jun 3, 20202 min read


Equip yourself to fight disinformation!
Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We wanted to make you aware of the problem, equip you with tools for how to recognize and respond to disinformation, and enlist your help keeping our community safe. According to numerous reports , much of this disinformation comes from organized campaigns by domestic groups or foreign governments. They rely on a mix of fake acco
May 9, 20202 min read


Celebrating Postcards to Doctors: Final Report
We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world!
Jan 28, 20204 min read
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