The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept. 19th at 12 p.m. ET to demand that the Biden administration declare Long COVID and ME/CFS a national emergency. #MEAction is organizing a protest of people sick and disabled from Long COVID and myalgic encephalomyelitis /
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
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
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
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
On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid, announced the Government’s intention to develop a cross-Government Delivery Plan on ME/CFS for England. This intention was published in a Written Ministerial Statement laid in Parliament. Development of the plan will build on the recently published
#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
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.
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
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
