#MEAction, Author at #MEAction Network

Email Doctor Unger about the Misinformation at CDC

May 27, 2022 4 Comments

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

#MillionsMissing: Videos Created by our Amazing Community

May 26, 2022 No Comments

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

#MillionsMissing MAY 2022 Wrap Up

May 25, 2022 No Comments

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

New T-Cell Research at the University of Massachusetts

May 18, 2022 1 Comment

#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

Exciting news about Mayo Clinic!

May 17, 2022 3 Comments

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

New Volunteer Leadership Program Led by Experts!

May 10, 2022 1 Comment

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

Research Update: The NIH Intramural ME/CFS Study

May 4, 2022 12 Comments

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

#MEAction Meets with the Department of Labor

May 4, 2022 No Comments

#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

Call-to-action for California: Centers of Excellence

May 2, 2022 No Comments

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

Elevating stories of the #MillionsMissing to HHS leadership

April 20, 2022 No Comments

#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

Author: #MEAction