Covid-19 Resources for People with ME

×

News

Advocacy News | Research News


Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.


Last week in review: CNN, Long-Covid Seminar, Severe ME Day & more!

Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open ...
James Strazza sits with guitar in one image, happy and healthy, and in the next image he is laying in bed very sick.

Let Us Honor the Most Severe in our Community Today!

Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th. Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in ...
The text reads Black Lives Matter

Black Lives Matter.

George Floyd. Breonna Taylor. Ahmaud Arbery. Tony McDade. There is so much pain, suffering, grief, and anger across the United States and around the world. As healthcare activists and advocates, we have seen time and time again that Black individuals face discrimination not just in their doctors’ offices but in

When POC Can’t Get a Diagnosis, Go Unseen

For decades, myalgic encephalomyelitis (ME) - also commonly called chronic fatigue syndrome - was erroneously portrayed as a white woman's disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was
People hold hands over language that reads #MillionsMissing

#MillionsMissing 2020 was powerful (full report)!

*We added an update below. Videos like the "I got a virus" video from #MEAction UK and #MEAction Scotland were viewed over 90k times on multiple platforms. Better than originally reported! Dear Friends, You are amazing. You made #MillionsMissing impactful, powerful, and moving. This virtual year no doubt had it's

Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at

Researchers Expect COVID-19 will Cause Surge of Chronic Illness, including ME

Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second
Millions Missing Banner

It’s #MillionsMissing Week!

It’s here. It’s #MillionsMissing week! Are you ready to gather allies, express your art, share your story, tune into some great performances, and celebrate our community?There is a lot to do, and you should only participate when and how you are able. Our numbers are mighty, so you are not

Equip yourself to fight disinformation!

Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We wanted to make you aware of the problem, equip you with tools for how to recognize and respond to disinformation, and enlist your help keeping our community safe. According
Ellie Rushton #MEAction UK Fundraiser

1000 Reps a Day for #MEAction – Fundraiser success!

Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every day for 6 months! We are so thankful to Ellie for her determination to support #MEAction and people with ME. Please, find below a few words from Ellie about her experience!
#TakeMEseriously giant card

Thousands add messages to 6m long card

In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is more important than ever. "I would expect that people who have Covid-19 symptoms quite severely, of those, I would expect about 10% to have fatigue-like syndromes after 6 months, given current

NIH announces two new funding opportunities for ME

On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed)PAR-20-168, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed) What is an R01? What is an R21? R01 and R21 are two

We Are Essential Campaign

#MEAction is going to embark on a four week campaign, #WeAreEssential, asking Congress to recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages.
NICE guidelines suspended until further notice

NICE suspend work on new ME guidelines

The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020. We support NICE’s aim to