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#MEAction Network Profile picture
@MEActNet
May 11 • 6 tweets • 3 min read Twitter logo Read on Twitter
#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
3. Share Your Story One of the most important aspects of #MillionsMissing is people sharing their personal stories. If you share your story on social media, make sure to tag @MEActNet & use the hashtag #MillionsMissing.
****PLEASE NOTE: We will be sharing graphics and wording on social later today that will make easy shares for those who need them. You are welcome to share or copy and paste. Whatever works for you! Your personal images work best but we do offer graphics if you prefer****
#MillionsMissing is powerful because of YOU and what this community can do together! There is a lot going on tomorrow so we would be remiss to not also encourage STOP REST PACE. Make sure to take care of yourself tomorrow and only do what feels right.

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More from @MEActNet

#MEAction Network Profile picture
May 11
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 9
#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
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
#MEAction Network Profile picture
Jun 1, 2022
New study out of Chicago that examined college students before, during, & 6 months after mononucleosis.
"Pre-illness data reveals differences in multiple metabolites and metabolic pathways in those who do and do not recover from infectious mononucleosis."
pubmed.ncbi.nlm.nih.gov/35640165/
"Metabolic pathways related to energy production, amino acids, nucleotides, nitrogen, lipids, and neurotransmitters in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) may contribute to the pathophysiology of ME/CFS."
"Examining pre-illness blood samples, we found...
"...significant detectable metabolite differences between participants fated to develop severe ME/CFS following IM versus recovered controls. We identified glutathione metabolism, nucleotide metabolism, & the TCA cycle (among others) as potentially dysregulated pathways." #MECFS
Read 5 tweets
#MEAction Network Profile picture
Mar 16, 2022
"Millions of people have already developed long COVID; many of them... have not recovered. This is the challenge of chronic illness: When people join its ranks, they do not always exit. With each new case of long COVID, the virus’s burden balloons." theatlantic.com/health/archive…
"To date, experts have yet to find any demographic that has been spared from the condition, despite persistent myths that certain groups, particularly kids, are somehow immune...Every iteration we’ve encountered so far, Omicron included, seems capable of causing long COVID."
"To this day, most countries do not keep a running tally of long-COVID cases. But ballparks of the burden are staggering. Some 2% of all U.K. residents—not just those with documented infections—might currently have long COVID, according to the Office for National Statistics."
Read 10 tweets
#MEAction Network Profile picture
Feb 22, 2022
"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

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