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![A red box on the left hand side features the #MEAction logo and the words Staff Share their #MillionsMissing Experience. On the right hand side is a photo of staff at the Washington Monument with red cots and chairs in the background.](https://www.meaction.net/wp-content/uploads/2023/06/MM23-Staff-Experiences-1-300x157.png)
Staff Share Their First-Hand Experiences from #MillionsMissing 2023
While we are busy working to create a new online experience to highlight all the images and speeches from
![Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.](https://www.meaction.net/wp-content/uploads/2023/06/Why-We-Keep-Telling-the-Story-of-ME-to-the-Press-Featured-Image-300x157.png)
Why We Keep Telling the Story of ME to the Press
Our press work continues to drum a strong beat as we tell the story of ME everyday to the
![the words " #MillionsMissing 2023: Scotland calls for healthcare education" appear in white on a red-muted background with the #MEAction Scotland UK logo in the bottom right hand corner.](https://www.meaction.net/wp-content/uploads/2023/05/MM23-Scotland--300x157.png)
#MillionsMissing 2023: Scotland calls for healthcare education
This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called
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Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
![](https://www.meaction.net/wp-content/uploads/2023/05/For-your-support-300x157.png)
Creative Fundraising Initiatives for #MEAction
Calls for immediate public release of RECOVER’s clinical trial design
![](https://www.meaction.net/wp-content/uploads/2023/04/Were-paving-the-way-to-a-new-experience-at-Mayo-Clinic-300x157.png)
#MEAction & Mayo ME/CFS Algorithm is Live!
Together, we built a new ME/CFS diagnostic & treatment algorithm for Mayo Clinic– including info on severe ME.
![Group of ME Action volunteers standing outside the Scottish Parliament at Millions Missing 2022, wearing red ME Action t-shirts and smiling at the camera. Two in the middle are holding a large sign which says Millions Missing spaced in between outlines of people.](https://www.meaction.net/wp-content/uploads/2023/04/MEAction-Scotland-MM-article-300x157.jpg)
#MEAction Scotland’s plans for #MillionsMissing
This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are
![2023 #MillionsMissing in white and black on a red background. The words, Join the UK and Scotland Digital Campaign in black marker font towards the bottom. The #MEAction UK and Scotland logos are the bottom left and right hand corners.](https://www.meaction.net/wp-content/uploads/2023/04/Join-the-UK-and-Scotlands-digital-campaign-this-MillionsMissing-300x157.png)
Join the UK and Scotland’s digital campaign this #MillionsMissing
May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and
![Young woman sits on floor at edge of bed looking distraught with head in hand](https://www.meaction.net/wp-content/uploads/2023/03/shutterstock_1927766504-300x200.jpg)
ME & Long COVID patients need telemedicine prescribing flexibility
DEA should amend its proposed rule to ensure access to care
![](https://www.meaction.net/wp-content/uploads/2023/03/Recover-Update-2-300x157.jpg)
NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
![A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.](https://www.meaction.net/wp-content/uploads/2023/03/Article-on-updated-SGPS-300x157.jpg)
#MEAction Scotland responds to the updated Scottish Good Practice Statement
The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023. The decision
![Text “Exercise can worsen Long Covid.” A person is falling through the air; their face is blurred and legs and arms are reaching upward. The background is a cracked glass screen.](https://www.meaction.net/wp-content/uploads/2023/03/Recover-Exercise-Study-5-300x157.jpg)
MEAction questions Long COVID exercise study’s safety, efficacy
Calls for immediate public release of RECOVER’s clinical trial design
![#MEAction logo is in white in the top left corner and the words Colorado State Chapter are in white laying across an image of snow capped mountains and pine trees. There is a bottom section of the image that is a green box with the words Working-With-Governors-Office-to-Create A New Senior Policy Advisor Role-Leading to Statewide Report on Long COVID](https://www.meaction.net/wp-content/uploads/2023/02/Working-With-Governors-Office-to-Create-A-New-Senior-Policy-Advisor-Role-LeadingLeading-to-Statewide-Report-on-Long-COVID.-300x157.png)
#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID
#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February
![Left: Woman healthy and happy standing beside her husband. Right: Sick woman in hospital bed.](https://www.meaction.net/wp-content/uploads/2023/02/o-1-1-300x157.png)
Woman with Severe ME and EDS starving to death in NHS hospital
UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now.
![A screenshot of Sue Webber MSP opening the debate on ME in the Scottish Parliament. Sue is a white woman with blonde hair. She’s wearing a flowery blouse, a dark jacket and a chunky necklace. The desks of the Debating Chamber are around her, and some other MSPs can be partially seen. At the bottom of the image, the words The Scottish Parliament debate on ME are written in black over a red box. The #MEAction Scotland logo is at the bottom, right hand corner.](https://www.meaction.net/wp-content/uploads/2023/02/The-Scottish-Parliament-debate-on-ME-300x157.png)
The Scottish Parliament debate on ME
Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023.
![the words, Moments that Warmed Our Hearts is written in white on a red background that features heart shaped balloons in pink and red.](https://www.meaction.net/wp-content/uploads/2023/02/Moments-that-warmed-our-hearts-300x157.png)
Moments that Warmed Our Hearts
This community is at the heart of everything we do. With this being a centering foundation for the work
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DHSC released a new progress Report
DHSC has released an update on the progress of the work underway to support the development of a Delivery
![Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo](https://www.meaction.net/wp-content/uploads/2023/01/TOP-Hits-2022-300x157.png)
Let’s Look at #MEAction’s Top Hits from 2022
As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished
![A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’](https://www.meaction.net/wp-content/uploads/2023/01/Debate-article-image-300x157.jpg)
Ask your MSPs to stand up for people with ME
Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and
![Red graphic with white text which says '#MEAction Scotland’s November community call.' Below is a graphic of a pair of hands typing on a laptop. On the screen is nine people on a video call and there are speech bubbles on either side.](https://www.meaction.net/wp-content/uploads/2022/12/MEAS-Nov-community-call-300x157.png)
#MEAction Scotland’s November Community Call
#MEAction Scotland’s latest community call took place on Wednesday, 23rd November. People with ME from across Scotland joined four
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I live at the intersection of pandemics: HIV, ME/CFS & Long COVID
Reflections on embodying intersecting identities of disease and disability
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Facets of ME: Centering ME During the Holidays
Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!
![ME/CFS Neglect Kills. Act Up. Fight Back. #MEAction. Red tinted image with protestors laying on grass in front of White House with grave stones. Protestor raises one clenched fist above head.](https://www.meaction.net/wp-content/uploads/2022/12/MECFS-Neglect-Kills-Act-Up_rectangle-300x169.png)
My Truth, Our Trauma, & A Call to Keep Fighting
Reflections from the World AIDS Day White House Protest
![Background photo of White House and lawn between two trees, tinted red. Bold text: "Fund Pandemic Plans" Below in small text: "World AIDS Day 2022"](https://www.meaction.net/wp-content/uploads/2022/11/WAD-2022_rectangle-300x157.png)
Take Action Virtually with our White House Protest
AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans
![Large bold text, on an angle reads: Join us for World AIDS Day to End Pandemic Nightmares. Dec 1 12 PM EST outside the White House and online everywhere. Below, a person of color in a face mask with a sign reading "HIV, Long COVID and ME/CFS, COVID-19, Ebola, cholera, monkeypox, TB, and more." Next to a white person in a face mask holding a sign reading "End COVID Everywhere." Below are the logos of organizational co-sponsors: Health GAP, Universities for Access to Essential Medicines, ACT UP New York, ACT UP Philadelphia, Long COVID Justice, Black and Latinx Community Control of Health, MEAction, The Peoples Vaccine, CPD Action, Spaces in Action, Strategies for High Impact, Access is Global.](https://www.meaction.net/wp-content/uploads/2022/11/WAD-End-Pandemic-Nightmares-Twitter-300x169.png)
On World AIDS Day, We’re Taking Action at the White House
White House Must Confront Global Health Nightmare of Colliding Pandemics
![Text across top of image reads: "Experts in infection associated chronic illness" with "WE WANT YOU!" bolded below it. Hand with finger pointed out at viewer. "Apply now" buttons to the left and right with mouse cursor clicking on them.](https://www.meaction.net/wp-content/uploads/2022/11/we-want-you-at-arpa-h_rectangle_apply-300x155.png)
Infection-associated chronic disease experts needed at ARPA-H
Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research
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BOLD ACTION is a Commitment to Healthcare Justice for People with ME
BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and
![](https://www.meaction.net/wp-content/uploads/2022/02/Scotland-Research-Study-Image-300x212.jpg)
What Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults
Caroline Kingdon’s new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as
![Dark image of person lying down with red blur across their head](https://www.meaction.net/wp-content/uploads/2022/11/Screen-Shot-2022-11-10-at-12.46.27-PM-300x213.png)
#MEAction Response to NY Magazine’s Egregious Article on ME and Long COVID
#MEAction has sent the following email to editors at New York Magazine to request it remove its fallacious article about Long COVID and ME.
![](https://www.meaction.net/wp-content/uploads/2022/11/NYT-Op-ed-Featured-Image-300x157.jpg)
#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!
Taking BOLD ACTION with our press outreach has led to national media writing about ME.
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Interview with #MillionsMissing France: Rally in Bourges
#MillionsMissing France has been busy.
![A mass lie down outside of the Scottish Parliament as part of Millions Missing Scotland 2022. Approximately 30 people are lying on the floor in front of the entrance to the parliament. Many are wearing red. A small group are sitting and standing in the distance, looking on. Overlaid is a red block with text that says ‘Ask your MSPs to sign motion S6M-06112.’ The ME Action Scotland logo is in the bottom right corner.](https://www.meaction.net/wp-content/uploads/2022/10/Scot-MSPs-Call-for-Motion-1-300x157.jpg)
Ask your MSPs to sign motion S6M-06112 and support people with ME
At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to
![financial chart with line rising in green interrupted by coronovirus after which line goes down in red](https://www.meaction.net/wp-content/uploads/2022/10/shutterstock_1663898314-300x178.jpg)
Long COVID’s U.S. Economic Impact Est. $140-$600 Billion Annually
Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.
![caring african-american medical nurse with hand on shoulder of a black senior patient in headwrap in office](https://www.meaction.net/wp-content/uploads/2022/10/shutterstock_151335629-300x200.jpg)
New Diagnostic Codes for ME/CFS in the US ICD-10-CM
Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records
![A group of people stand outside the Scottish Parliament building at Millions Missing Scotland 2022 looking serious. Many of them are wearing red ME Action t-shirts. Some people are holding signs that say Millions Missing. In the middle, someone is holding a large piece of card with a pledge on it and signatures of MSPs. One person is in a wheelchair and one is on a mobility scooter.](https://www.meaction.net/wp-content/uploads/2022/10/Millions_Missing_28_09_22-283-300x200.jpg)
Members of the Scottish Parliament pledge their support for #MillionsMissing
On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament – the first time
![Multiple pictures of people faces in red shirts behind a red overlay with a MEAction logo and the words #MillionsMissing Activism from Home in a gray box over the pictures.](https://www.meaction.net/wp-content/uploads/2022/09/MillionsMissing-Activism-From-Home-Featured-Image-300x155.png)
#MillionsMissing 2022: Activism From Home Was Beyond Impressive
There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing
![hand holding a paper sheet with injustice, unfairness symbol over crowded street background.](https://www.meaction.net/wp-content/uploads/2022/09/shutterstock_1314624404-300x200.jpg)
Tell HHS about your experience of healthcare discrimination
People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there
![Organizations who won the grant all depicted together](https://www.meaction.net/wp-content/uploads/2022/09/Logo-Graphic-1-300x169.png)
#MEAction & Mayo win Grant for Diagnostic Improvement
Amazing news! #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
![](https://www.meaction.net/wp-content/uploads/2019/08/c713287d20e44300d1bf00fbd1c10c3b-300x150.jpg)
DHSC release progress update.
DHSC has released an update on the progress of the work underway to support the development of a Delivery
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#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
![People lying on the sidewalk in front of the white house](https://www.meaction.net/wp-content/uploads/2022/09/Screen-Shot-2022-09-19-at-9.54.15-AM-300x208.png)
Protest at White House to Tell President Biden “Pandemic Is NOT Over”
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.
![People lying on the sidewalk in front of the white house](https://www.meaction.net/wp-content/uploads/2022/09/Screen-Shot-2022-09-19-at-9.54.15-AM-300x208.png)
Americans Disabled By Long COVID and ME/CFS Protest Biden’s Claim that “Pandemic Is Over.”
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.
![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](https://www.meaction.net/wp-content/uploads/2022/08/MM-Scotland-update-300x157.jpg)
New date for #MillionsMissing Scotland
Following the postponement of #MillionsMissing Scotland, the demonstration has been rescheduled to Wednesday 28th September. #MillionsMissing Scotland will now
![](https://www.meaction.net/wp-content/uploads/2022/09/protest-2-300x200.jpeg)
LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19
The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept.
![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!](https://www.meaction.net/wp-content/uploads/2022/09/MillionsMissing-Scotland-Postponed-300x157.png)
#MillionsMissing Scotland postponed
The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed. Following the death
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#MillionsMissing London is Postponed
Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are
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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
![#MillionsMissing with a red string underneath in a white box, overlayed an image of book on shelves. A red box below with the #MEAction UK logo, and the words #MillionsMissing London Virtual Actions: Social Media Photos and Letters/Emails to Wellcome Trust](https://www.meaction.net/wp-content/uploads/2022/09/MillionsMissing-London-Virtual-Actions-300x157.png)
Virtual Actions For #Millions Missing London-Social Media Action and Letters/emails to Wellcome Trust
We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the
![The image is of a scientific lab with a woman in a white lab coat looking through a microscope](https://www.meaction.net/wp-content/uploads/2022/08/shutterstock_1884612922-300x169.jpg)
Protecting the Most Vulnerable: Complexities of Vaccines and Chronic Illness
It has been over a year since the COVID-19 vaccine became available, and a subset of people with myalgic
![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.](https://www.meaction.net/wp-content/uploads/2022/09/MillionsMissing-Scotland-MSP-action-300x157.jpg)
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
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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
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Facets of ME: Travel Tips
Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where
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The DHSC have released details of their process in the Development of a Delivery Plan on ME
On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid,
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Severe ME Artist Project 2022 — Gallery
A collection of works by artists with severe ME.