NEWS

Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023. It was a successful debate with a good turnout of MSPs from across all parties, and it had to be extended due to the amount of MSPs who wanted to speak. There were calls on the government to pilot specialist services, fund research, and implement the NICE guideline. Many MSPs shared stories that people had sent them and talked about how many people

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS!#MILLIONSMISSING 2022:• Bringing together the powerful Virtual #MillionsMissing Event in May that featured a wide range of diverse speakers and drew in a large audience.• LEVELING UP OUR ADVOCACY with an in-person protest for #MIllionMissing September outside th

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February - and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased that 59 MSPs have given their support to the motion, and you can see if your MSP supported it on the Scottish Parliament

#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!

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

White House Must Confront Global Health Nightmare of Colliding Pandemics

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

BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking BOLD ACTION is both a pragmatic tactical tool for building the people-based power of our movement, and it is the vivid demonstration of the too-long hidden cris

Caroline Kingdon's new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as well as Charles Shepherd of the ME Association and Luis Nacul of the London School of Tropical Medicine. As members of the NICE guideline development committee, the authors wrote this paper with GPs and primary care practitioners in mind. It explains the key messages of the guideline, including the need for better and earlier diagnosis, better treatment and the n

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.

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

#MEAction and Mayo Clinic win SIDM for diagnostic and treatment improvement at Mayo Clinic Rochester for people with ME/CFS!

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