Category: Community

Just In Time for the School Year: A New Pediatric Pacing Guide

#MEAction is excited to share a new and much-needed resource just in time for back to school! We are so thankful to have our allies at Long Covid Families join us in developing the Pacing and Management Guide for Pediatric ME/CFS and Long COVID.  Access the New Pediatric Pacing Guide Our Pacing and Management Guide

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A laptop on a desk displaying the PDF of the NICE guideline for diagnosis and management of ME. There is a cup to the left and a pair of glasses and some folder to the right. White text in a red box reads ‘Update on Scottish implementation of the NICE Guideline’ and the ME Action Scotland logo is in the top left.

An update on the Scottish implementation of the NICE guideline

As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and management of ME. The first step in the process was a Scottish stakeholder review, carried out externally by consultant Blake Stevenson.  The report on the review was published in July and #MEAction Scotland supports its findings.

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A charcoal grey flag with a diagonal band from the top left to bottom right corner, made up of five parallel stripes in red, gold, pale grey, blue, and green

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

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

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MEAction Logo and the words Volunteer Survey written over a red box and a red background.

New #MEAction Volunteer Survey

#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

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Happy Pride Month 2022 with rainbow ribbon in a heart

#MEAction Recognizes & Celebrates Pride Month 2022!

#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

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Severe ME Artist Project 2022 over swatches of gold paint

Severe ME Artists Project 2022!

#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

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Facets of ME: Temperature Dysregulation

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.

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#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. Click on any of the

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