Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
#MEAction Network Profile picture
@MEActNet
Feb 22, 2022 • 4 tweets • 3 min read • Read on X
"Millions of people continue to suffer from exhaustion, cognitive problems & other long-lasting symptoms after a coronavirus infection."

Striking visual journalism by @joshkellerjosh for @nytimes in "How Long Covid Exhausts the Body."

Thanks for the link to our #StopRestPace!
"Some long Covid patients meet the criteria for ME/CFS (also known as chronic fatigue syndrome), which often starts after a viral infection. Researchers have found that ME/CFS patients also suffer from a lack of oxygen triggered by circulatory problems." #longCovid #MECFS
"Another research group found that long Covid may significantly reduce the amount of blood that reaches the brain, a finding that has was also seen in patients with a related chronic condition, ME/CFS, before the pandemic."
Learn more about #MEAction's #StopRestPace campaign launched in 2020 & still ongoing as there is an urgent need to reach the people who had #LongCovid & who are showing symptoms of ME/CFS- specifically post-exertional symptom exacerbation.

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with #MEAction Network

#MEAction Network Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @MEActNet

#MEAction Network Profile picture
Apr 24
May is a busy month for our community! We wanted to help everyone out by gathering these important US government dates for NIH and CDC meetings -May 2, 6, 15, & 28.
#MillionsMissing week is May 3- 12 and #WorldMEDay is May 12th.
#pwME #MECFS #NIH #CDC
Thread with links ⬇️ Image
May 2 - 9 am to 4 pm ET: NIH PI-MEC/CFS symposium. Registration required for in person but not for virtual attendees. mregs.nih.gov/channels/F1P5-…
May 6- 3 pm ET: CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call cdc.zoomgov.com/j/1616905952?p…
Read 4 tweets
#MEAction Network Profile picture
Jun 20, 2023
Wondering about the terms PEM or pacing? Seen #StopRestPace & were curious as to what it referenced? Been in our community a long time & want easy ways to explain these concepts? Perhaps you have seen pacing misused & want to clear that up. We hope this thread helps! #pwME #PwLC A helpful thread on PEM, pa...
Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, & sensory overload can trigger PEM. What is PEM? Post-exertiona...
Sometimes exertion is misunderstood as exercise. Exertion is defined here as anything that stresses or strains the system. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.
#PEM #MECFS #LongCovid Exertion does not equal exe...
Read 7 tweets
#MEAction Network Profile picture
May 11, 2023
The government's public health crisis may be officially ending, but for millions of people with ME/ Long Covid, we are #StillSickStillFighting.
#MillionsMissing 2023 is May 12th at the Washington Monument featuring an art installation & press conference. millionsmissing.org Graphic of the Washington M...
ME/CFS is a neurological disease with symptoms in all body systems that affects people of all ages and backgrounds. Most cases of ME/CFS are triggered by infection, often a viral infection. Before the pandemic, there were millions of people in the US living with ME/CFS.
Now, half of the Long COVID community meets the diagnostic criteria for ME/CFS. This more than quadrupled the number of people living with ME/CFS in the US.

#MECFS #LongCovid Over a red background featu...
Read 5 tweets
#MEAction Network Profile picture
May 11, 2023
#MillionsMissing 2023 is tomorrow! It will be a powerful day–where this community comes together to share their stories, demand that we receive the treatment and care we deserve, and garner the much-needed press attention. Reminders of how to prepare in this thread. Graphic for #MillionsMissin...
We are heading to the Washington Monument in DC with an art installation and press conference! This art installation will highlight the #MillionsMissing from their lives due to ME and Long COVID and draw attention to our community’s demands.

Ways you can join in 🔻
1. Watch/Share the Press Conference It will be livestreamed TOMORROW at 11am PT/2pm ET on our YouTube channel, Facebook, Twitter, and on our site. (should all tech work as planned!)

2. Activism From Home Toolkit and Pre-made Graphics : bit.ly/MMAFMWG
Read 6 tweets
#MEAction Network Profile picture
May 9, 2023
#MEAction is hosting a demonstration at the Washington Monument on May 12th! Join us there in person or show your support from home! Together, we will make our voices heard so we can command the attention of the government and the press. Find out more at millionsmissing.org.
The art installation will be at Washington Monument (northeast side) from 9 am to 3:30 pm ET.

The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email press@meaction.net )
meaction.net/event/millions…
We have an Activism from Home Toolkit for everyone joining in the critical effort of making sure our #MillionsMissing stories & effort are shared far & wide. #pwME #pwLC
bit.ly/MMAFH

#MyalgicEncephalomyelitis #LongCovid #MECFS
Read 4 tweets
#MEAction Network Profile picture
Apr 5, 2023
Nature published an article about our communities' (#longCOVID and #MECFS) major concerns about studying exercise therapy for #LongCovid.

#MEAction had numerous conversations with the reporter to explain why treating PEM with exercise therapy is harmful.
bit.ly/3Kp5dis
"In a world where there’s hundreds of things to trial, why are we choosing this one thing that we know has the potential to cause harm to a substantial portion of patients?” asks Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative for long COVID. @patientled
#MEAction has sent several letters to RECOVER explaining our concerns about this trial, and why it's imperative that people with PEM are excluded: meaction.net/wp-content/upl…
Read 5 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

Send Email!

:(