Category: Advocacy

#MillionsMissing Press Hits are Rolling In!

The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing protest in front of the White House.   One day after President Biden declared the “pandemic is over,” our community was at the gates of the White House to send Biden a message that a pandemic of chronic

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Red box at the top says Join us at #MillionsMissing Scotland! Then there is a picture of people gathered at a protest holding signs and wearing read shirts, some are in wheelchairs. Low bottom of the image has a red box that says New Date: Wednesday, 28th September 12:30-2:30pm

New date for #MillionsMissing Scotland

Following the postponement of #MillionsMissing Scotland, the demonstration has been rescheduled to Wednesday 28th September. #MillionsMissing Scotland will now take place on Wednesday 28th September, from 12.30-2.30pm. We appreciate this isn’t a lot of notice but we are keen to build on the momentum the event has already gained and to hold it while it

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Red #MilllionsMissing words with a red string underneath, laid upon a image of books on shelves. Red square with the #MEAction Scotland Logo and the words #MillionsMissing Scotland 14th September- POSTPONED!

#MillionsMissing Scotland postponed

The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed. Following the death of Her Majesty the Queen, the Scottish Parliament is suspended, which means we won’t be able to achieve the aims of the event. We appreciate that it’s disappointing and apologise for any inconvenience caused, particularly to

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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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