Category: Advocacy

NIH Extends Funding for ME/CFS Research Centers

The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research awards for the ME/CFS Collaborative Research Centers (CRC) and the Data Management and Coordinating Center (DMCC). The currently-funded research centers which apply, and are approved, for another 5-year term will no longer face a 7-month funding

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A red graphic with white text along the bottom that says ‘Ask your MSPs to join us at Millions Missing Scotland!’ On the left is an icon of a laptop and the email @ symbol, with three yellow envelopes floating out of it. On the right is a photo in a white frame of a group of people outside the Scottish Parliament building, from the protest in 2017. They are wearing red ME Action t-shirts and holding posters and banners about ME. Some are standing and some are sitting in wheelchairs. A person in the centre is holding a microphone.

Ask your MSPs to join us at #MillionsMissing Scotland

Whether or not you can join us in person at this year’s #MillionsMissing, you can help to make it a success by emailing your MSP and asking them to come out, say hello and sign a pledge to support people with ME. #MEAction Scotland will be outside the Scottish Parliament to engage with as many

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Multiple head silhouettes in a gradation from grey and white to a rainbow of colors.

How Dept. of Labor can better track disability from chronic illness

Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor (DOL) should make in order to better track disability due to chronic illnesses such as ME/CFS and Long COVID in its regular surveys of disability employment issues.  We provided feedback on ways to improve questions on

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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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Dept. of Labor hosts dialogue on Long COVID in the workplace

The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges Related to Long COVID.” The online dialogue is a text-based forum that will remain open for posting ideas and voting and commenting on those ideas until August 10th. In addition to people with Long COVID, #MEAction

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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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