#MEAction, Author at #MEAction Network

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#DisabilityPrideMonth: Listen to The Century Foundation’s podcast Off-Kilter

July 20, 2022 No Comments

As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic Justice Collaborative* members and other leaders from the disability community. #MEAction board member Ryan Prior is a guest on the two-part Off-Kilter ADA 2022 Special that dives “into the picture for the millions of Americans now

New #MEAction Volunteer Survey

July 15, 2022 No Comments

#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link will be available on #MEAction’s website until Friday, July 29th. We encourage everyone to thoughtfully consider each question, fill out their responses, and submit the survey by the due date. The survey consists of 12 questions

Happy Pride Month 2022 with rainbow ribbon in a heart

#MEAction Recognizes & Celebrates Pride Month 2022!

June 30, 2022 1 Comment

#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked members of our LGBTQIA+ community to share what Pride means to them and what they have learned from this movement that they bring with them to the ME movement. Here are a few responses: Kristina Osobka-Stier

Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan

June 29, 2022 1 Comment

#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on behalf of people with ME and Long COVID since our last update in May. HHS has been directed by the White House to play a leading role in coordinating the response to Long COVID and associated

Severe ME Artist Project 2022 over swatches of gold paint

Severe ME Artists Project 2022!

June 29, 2022 13 Comments

#MEAction is once again excited to announce our Severe ME Artists Project 2022 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase their art work (whether it be

NEW YORK ACTION ALERT: NEED NY GOVERNOR KATHY HOCHUL TO SIGN ME/CFS BILL INTO LAW!

June 28, 2022 No Comments

Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our ME/CFS bill into law! Take action now! Thanks to you and the #MEAction community, bill A7712B/S6928B, which provides for a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education and outreach program in New York, finally passed both the

Facets of ME: Temperature Dysregulation

June 23, 2022 8 Comments

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.

Dept. of Labor Updates Information on ME/CFS for Workers, Employers

June 21, 2022 1 Comment

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

#MillionsMissing: 7 Days in Self Portraits with ME/CFS

June 21, 2022 1 Comment

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. Click on any of the

U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases

June 13, 2022 9 Comments

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

Author: #MEAction