2026
We are awed by the tens of thousands of people who organized #MillionsMissing demonstrations across the globe to raise awareness about myalgic encephalomyelitis (ME), and to call for change!
We want to take a moment to honor everyone who showed up to fight for ME, both on the streets and from their homes and beds.
IN THE US, #MEACTION MET WITH HHS & CONGRESS
#MEAction had a full week, meeting with Health and Human Services (HHS) officials and Congress Members! On May 12th, we held a demonstration at the HHS where we met with the Senior Advisor to the U.S. Surgeon General, Dr. Stephanie Haridopolos (pictured below, left, in the cream suit), who listened to advocates and spoke publicly in support of people with ME and Long COVID. #MEAction also met with 11 Congressional Offices to discuss appropriating funds to the ME/CFS Research Roadmap. Read more.
#MILLIONSMISSING DEMONSTRATED GLOBALLY
The #MillionsMissing turned out for demonstrations globally in the U.S., U.K., France, Brazil, Portugal, Switzerland, Denmark and Holland.
FRANCE
The #MillionsMissing held demonstrations in 8 cities across the country to call out the abandonment of patients, and to raise awareness about ME. Watch the video below.
PORTUGAL AND BRAZIL
In Portugal, the Associação Aliança Millions Missing Portugal successfully secured official recognition for ME from Portugal's parliament - the Assembly of the Republic - to recognize ME/CFS as a "multi-systemic and crippling disease." (Top picture below.)
In Brazil, the Associaçāo Aliança Millions Missing Brasil mobilized the community to show up online and make ME visible! (See pictures below.)
UK AND SCOTLAND
UK: #MEAction UK mobilized the community to contact their MP, using advocacy guides, to press for the setting up of an NHS service for the very severely ill with ME. This got excellent feedback so people were asked to keep doing it if their energy allowed. We are also asking people to share our posts with real images of the very severely ill, and tag their MP and James Murray MP on social media.
Scotland: #MEAction Scotland’s campaign followed a general election in Scotland on 9th May and focused on welcoming Members of the Scottish Parliament (MSPs) to the new session of Parliament. Scotland ran a social media campaign encouraging people with ME to email their MSPs, tell them their stories and urge them to ensure the funding for ME services announced last year by the Scottish Government is wisely spent. We received a number of very encouraging responses to the campaign with MSPs offering to take action on our behalf, and the submission of a Parliamentary motion supporting ME Awareness Week and MEAction Scotland's work. Please let us know if you hear back from your MSP/s!
DENMARK, SWITZERLAND AND HOLLAND
The Denmark ME Association hosted an event about ME in Copenhagen, sharing information about ME with passers-by, doctors and health personnel and a parliamentary politician.
Switzerland held an event in Zurich - attended by several hundred people - to raise awareness about people living with ME and Long COVID, and to call for improvements in medical care and research.
#MillionsMissing Holland highlighted experiences from the community (see left-hand image below), and also launched a series about measurable elements of ME/CFS called, "Measuring is Knowing." (Click the photo.)
GERMANY
Meanwhile, #LiegendDemo organized “lie in” protests in 42 cities across Germany. The Sick Times reported that the demonstrations drew over 12,000 people in person and 700 people virtual participants. The protests called for "an end to the psychosomatic treatment of ME by doctors and health insurance companies, mandatory training for medical personnel, and large-scale public health campaigns.”
THE #MILLIONSMISSING SHOWED UP FROM HOME!
The amount of creativity, bravery, compassion and perseverance in our community is breathtaking. To everyone who shared their story on social media, you made a difference!
#MEAction runs 8 different social media accounts and on our Instagram alone we had 440, 250 views for the month of May, and 53 percent of those views were non-followers, which meant that our social media was reaching beyond our own community.
Long after the t-shirts and banners have been folded away, #MEAction and our community will continue to fight for true progress for ME. Stay with us!
