NEWS

Calls for immediate public release of RECOVER's clinical trial design

#MEAction Scotland’s latest community call took place on Wednesday, 23rd November.People with ME from across Scotland joined four volunteers to catch up on what #MEAction Scotland has been doing since the summer.First up was feedback on a very successful #MillionsMissing event at the end of September. The main focus of that event was to engage with MSPs, asking them to attend to meet with and show their support for people with ME. As a result of a widespread and powerful emai

Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!

My name is Gabriel San Emeterio and I’m the cofounder of Strategies for High Impact and its Network for Long COVID Justice. I’m grateful to be here with the communities that I'm a part of and that I hold dearly which are: people living with HIV, and people living with illnesses that have a viral trigger such as Myalgic Encephalomyelitis or ME/CFS and Long COVID. Today, many decades after AIDS started killing us, we are in the crosshairs of colliding pandemics.Today is the 34t

Reflections from the World AIDS Day protest at the White House Protest

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems.As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open letter calling for experts in infection-associated chronic illness to pursue this opportunity.Our coalition includes: #MEAct

New York Magazine’s Intelligencer published an fallacious article last week about Long COVID and ME/CFS in which the author, Jeff Wise, paternalistically argues that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) can successfully treat patients if only the ME and Long COVID communities were open to this possibility. Wise fails to acknowledge the long history of patients willingly undergoing these treatments at the guidance of their doctor, and the subseq

Taking BOLD ACTION with our press outreach has led to national media writing about ME.

#MillionsMissing France has been busy.

At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to follow up on that commitment. And we need you to let them know about it! Sue Webber, MSP for Lothian, has put forward a motion that asks the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME commissioned earlier this year - ​​including education of healthcare professionals and development of specialist services.Motions

Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.

On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament - the first time it’s been held in-person for three years. While it was in some ways a smaller event than #MillionsMissing Scotland was in 2018 and 2019, what it lacked in spectacle it made up for in engagement from politicians and the press.Approximately 120 people with ME, their friends and families joined #MEAction Scotland at the demonstration. A

There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing press wins. You tuned into the live stream on Twitter. You saw the article that cover our government’s response. We are thrilled. And we want to take a moment to acknowledge all of the amazing activism from home that happened on or around September 19th. We saw #LongCOVID and #COVIDIsNotOver trending online. This is no small feat with all that was going on t

People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there is an opportunity for you to share your story and urge our government to move forward with improved protections to secure access to healthcare that is free from discrimination or prejudice.The deadline to submit a public comment is Monday, October 3rd at 11:59pm ET.Let’s share our stories and tell HHS that discrimination has no place in health care

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 disease rages on. Protesters called on President Biden to declare Long COVID and ME a national emergency, and to provide all the urgent, full-scale resources for addressing t

Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.

Protesters disabled by Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) lay down on the White House sidewalk today risking arrest to tell President Biden that the pandemic is not over, and that millions are being disabled from post-viral disease, including Long COVID and ME/CFS.

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 will still be in the minds of the MSPs who have been invited. All previous plans remain the same. This event will be a smaller,

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 / chronic fatigue syndrome (ME/CFS) who are willing to put their bodies on the line, this Monday, Sept. 19th at 12pm ET on the White House sidewalk, 1600 Pe

We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME.  ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME  biomedical research and this has to change.Virtual ActionsStep 1: Take a picture of yourself holding a red threadHere are the