#MEAction launched our #StopRestPace campaign in 2020 knowing there was an urgent need to reach the people who had #LongCovid & who are showing symptoms of myalgic encephalomyelitis (ME). That need has grown increasingly urgent as the pandemic has become a mass-disabling event.
In 2020, researchers were predicting 10-12% of those who caught COVID19 would develop ME/CFS. Almost 2 years into the pandemic, we now have preliminary studies showing that nearly half of Long COVID patients are meeting the diagnostic criteria for ME/CFS.* meaction.net/long-covid-me-…
The cardinal symptom of ME is post-exertional malaise (PEM), or post-exertional symptom exacerbation. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion- often delayed after the triggering event. #pwME #MECFS
It is critically important for people with ME not to push past their symptoms and overexert themselves until they crash. Pushing through their symptoms can cause permanent damage. We know the harm that has been done to the ME community. Let us use our voices to protect others.
Please continue to share our #StopRestPace videos, pacing guide, and other helpful info to encourage the Long COVID community to #StopRestPace themselves to prevent harm.

Learn more: meaction.net/long-covid-me-…

Find the pacing guide: meaction.net/resource/pacin…

#pwME #LongCovid
*Not all people with Long COVID will develop ME. Recovery, organ damage, other post-viral complex chronic diseases (autonomic disorders, mast cell activation syndrome (MCAS) & autoimmune disorders) are also possible. They might deal with more than 1 disease or complication.

• • •

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

Feb 22
"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."
Read 4 tweets
Feb 1
Great video interview with #MEAction's Director of Scientific & Medical Outreach Jaime Seltzer @exceedhergrasp1 with Frank Diamond of @ICT_magazine.

"We expect the number of people with ME/CFS to triple or quadruple due to the pandemic alone."
#pwME
infectioncontroltoday.com/view/getting-a…
Transcript is available under the video.

"We have so much history—recent history as well as 100 years ago—to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications."
#longCovid #pandemic
"...when long COVID became a big deal & a headline on the international stage, researchers at very impressive institutions with very impressive roles first became interested in post-viral disease...that’s wonderful...we all welcome them to the field, & we hope that they’ll stay."
Read 9 tweets
Jan 31
Adriane Tillman at #MEAction writes, "Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus & never recovered before the pandemic & developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.”
"Advocacy groups for those with long COVID and ME/CFS want the NIH to include research in ME/CFS as part of the agency’s $1.15 billion RECOVER initiative, and Tillman writes that “ample research [already] exists on post-viral illness.” #pwME #LongCovid #MECFS
“And yet, we continue to see amnesia and inaction from the NIH when it comes to building off the post-viral knowledge that already exists. Researchers with little experience in long COVID and no experience before COVID-19 are directing NIH-funded initiatives; this means people...
Read 4 tweets
Nov 19, 2021
Content warning: We recommend caution when reading if you are not in a safe place to be reading about assisted dying.

@IamMADELINEpod recently had an op-ed published in @ipoliticsca. In it Madeline shares, "I am dying, and my death is completely preventable."
Madeline is a person with severe ME who is telling her story including how British Columbia will no longer cover the oral & intravenous medications keeping her alive.
Madeline ends her op-ed with an ask for the public. "Now, I’m asking for your help. I’m asking you to speak up."
"Write a letter, make a phone call, tweet something at the government in play where you live. If you, my fellow Canadian citizens, don’t insist on improvement so that people like me at least have a chance at a decent quality of life, I don’t see how this can possibly change."
Read 5 tweets
Nov 18, 2021
We’ve raised over $22,000/£16,000 for our End of Year Giving Campaign! Thank you! 🧵meaction.net/eoy-2021/

Time to reveal Staff Characters!
Adriane: The Press Scribe
Ben: The Huntsman of Agencies
Erin: The Valkyrie of Programs & Campaigns
Holly: The Town Crier of Social Media
Jaime: The Wizard of Research & Medical Education
Julia: The Mystical Fairy of Fundraising
Laurie: The Manager-ing Elf
Steven: The Court Jester of Communications

We have reached our 2nd fundraising level, but we must keep driving forward #MEAction’s End of Year Giving Adventure!
The Giving Adventure is a fun way to raise funds, but it also provides us an opportunity to connect as a community--which is at the heart of everything we do at #MEAction! So join in & share a tweet and/or picture about what your fantasy character would be AND tag @MEActNet.
Read 5 tweets
Aug 14, 2021
"Unfortunately, current numbers & trends indicate that “long-haul Covid” is our next public health disaster in the making. To understand the landscape, we can... apply the lessons of past failures in approaching postinfection chronic disease syndromes." nejm.org/doi/full/10.10…
#MedTwitter if you want to understand the landscape & better understand the next public health disaster, we can help you.

Want to learn more about ME/CFS mentioned in the @NEJM?

We have curated info for healthcare providers here: meaction.net/learn/healthca…

#MedStudentTwitter
We know this is a rough time to be a healthcare provider with so much being asked of you. How about learning through a Sundance award winning documentary? @unrestfilm is on @netflix & medical education credits are available here: unrest.film/cme

#MedEd #MedTwitter
Read 4 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 on Twitter!

:(