Press releases Archives

#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID

August 23, 2023 No Comments

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS – and our core symptoms overlap – RECOVER’s research has major implications for our community.

#MEAction & Body Politic: We Are Stronger Together

July 20, 2023 3 Comments

Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s advocacy work as a project of #MEAction. Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community – we know so much of the Long COVID

Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall

May 12, 2023 No Comments

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.

#MillionsMissing Press Hits are Rolling In!

September 20, 2022 No Comments

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

People lying on the sidewalk in front of the white house

Protest at White House to Tell President Biden “Pandemic Is NOT Over”

September 19, 2022 2 Comments

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.

LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19

September 13, 2022 2 Comments

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 /

#MEAction Swinging Through The Press Jungle

November 27, 2021 No Comments

Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this next adventure and make sure

Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release

October 29, 2021 No Comments

Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge

Where Does Your Donation Go?

August 20, 2021 No Comments

Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to

Fury as NICE cancels publication of finalised ME/CFS guideline

August 17, 2021 2 Comments

There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their

Category: Press releases