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@MEActNet
Apr 5 • 5 tweets • 3 min read Twitter logo Read on Twitter
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…
RECOVER only plans to launch 6 clinical trials. Our communities are calling for trials that focus on interventions with real potential.

“Dozens of drugs... have been identified as promising candidates that need immediate further study,” said patient rep. Charles McCone.
Long COVID Justice was the first to raise the alarm about this trial publicly, putting out a petition last year. SIGN the petition here: actionnetwork.org/petitions/tell…

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More from @MEActNet

#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
#MEAction Network Profile picture
Feb 1, 2022
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
#MEAction Network Profile picture
Jan 31, 2022
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
#MEAction Network Profile picture
Jan 21, 2022
#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
Read 6 tweets

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