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#pem

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Continued thread

More quotes:

"We also hosted our annual EmPOWER M.E. virtual forum, designed to give patients practical tools and legal knowledge to navigate life with complex chronic illness.

This year’s main session focused on the life-saving practice of pacing — including physical, emotional, cognitive, practical, and sensory strategies …"

Recording of the June 27 EmPOWER M.E. forum:

youtube.com/watch?v=to9xPPuRM1

@mecfs @longcovid

4/n

Für manche Personen im Gesundheitssystem bleibt Post Exertional Malaise (PEM) weiterhin „rätselhaft“.

Etwa für die Gutachter*innen der Pensionsversicherungsanstalt (PVA), die über Rehabilitationsgeld und Berufsunfähigkeit entscheiden. Diese wird in der Regel mit ME/CFS kaum gewährt.

Letzteres legt eine groß angelegte Recherche von APA, ORF und Dossier zu Gutachten der PVA nahe, die sich zig Anträge von Patient*innen angesehen haben.

By @RTHM_Health

"A new study suggests that exercise doesn’t clear microclots in people with Long COVID—it just fragments them into smaller ones. These smaller clots are linked to increased inflammation and impaired oxygen transport, which may help explain post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE)—a worsening of symptoms after even mild physical or mental effort."

"Researchers observed these microclot and inflammatory changes even after submaximal exertion, highlighting the need for caution when recommending exercise-based therapies."

Want more research breakdowns like this? Sign up for our email list at linktr.ee/rthm_health

🔗 DOI: doi.org/10.21203/rs.3.rs-67177

Continued thread

@mecfs

ed.ac.uk/news/scale-of-how-mec

Another quote:

"Some 116 significant differences were found in both men and women, a key finding as ME/CFS can affect sexes differently. The consistent results across both groups strengthens the reliability of the biomarkers, experts say.

The strongest biomarker differences were found in people who reported symptoms consistent with post-exertional malaise, highlighting its central role in the illness."

The University of EdinburghScale of how ME/CFS affects blood revealedPeople with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness.
#MEcfs#PwME#PEM

I can do math.

But if I don't know how many #spoons I have on any given day at any given hour, how am I supposed to spend them.

How do I make sure to keep a few in reserve for emergency situations?

How do I keep extra for encountering pushback & frustration (don't cry!) & anticipation of a worse situation, while staying calm & caring?

While spending the ones set aside for cooking a simple meal to feed brain cells?

How to math how many days to get them back?

Great article on the parallels between the #ClimateCrisis and #ChronicIllness such as #LongCovid and #mecfs.

"Because #pwME know that a crash is unpredictable and impossible to reverse, the goal of pacing is to not encounter the symptoms at all. Success is measured not by a fast and furious response at the moment of crisis but by the absence of a need for intervention. But US society, like a new pwME still unfamiliar with the costs of #PEM, is staring down a cycle of “crashes” from which we won’t be able to easily return. We haven’t treated bird flu as a serious health problem, and probably won’t until it explodes into the population with the onset of airborne human-to-human transmission, at which point – if the COVID response is our example – we’ll have lost hope of controlling it before the virus’s significantly higher mortality rate strikes a meaningful blow. Long COVID isn’t a problem until we can find no other explanation for why millions of people are unable to work, school performance and children’s health decline in unison, and no one can remember what it feels like not to be sick all of the time. The climate crisis requires no changes to our consumption patterns until our major cities burn, at which point the solution is to consume more. Our retroactive responses to these interlocking crises are both more resource-intensive and less effective than a paced approach."

"the climate resilience our society needs to build relies upon the skills and systems of pacing that disabled and chronically ill people have built to manage both their own symptoms and the ongoing COVID-19 pandemic"

---
A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles – Yale Global Health Review

yaleglobalhealthreview.com/202

Yale Global Health Review · A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los AngelesBY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…
Continued thread

If you learn nothing else from my thread today, please remember this:

Exercise is NOT recommended for people with ME/CFS!

Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.

This video has more info:

youtube.com/watch?v=wxSwYUennB

3/n

@mecfs @longcovid

#MEcfs#PwME#PEM

Viele #MECFS- und #PostCovid-Betroffene in #Österreich erhalten trotz gravierender Einschränkungen keine #Berufsunfähigkeitspension oder kein #Pflegegeld.

Eine gemeinsame Recherche zeigt, dass 79 % der eingereichten Anträge abgelehnt wurden, oft ohne Anerkennung der Diagnosen oder des Leitsymptoms #PEM.

Fachleute kritisieren veraltete Gutachtenstandards, fehlende Hausbesuche und die häufige Umdeutung körperlicher Beschwerden in psychische Diagnosen.

derstandard.at/story/300000026

DER STANDARD · Post-Covid- und ME/CFS-Betroffenen bleiben Berufsunfähigkeitspension und Pflegegeld oft verwehrtDas zeigt eine Recherche von APA, ORF und "Dossier". Laut Pensionsversicherungsanstalt gibt es keine offiziellen Daten

Watching this now.

From the description: "In this film, five medical doctors open up about living with #PAIS/#IACC conditions like #me #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!

They speak candidly about their experiences with #illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on #medicine, #science, and what needs to change in #healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and #patients alike.

This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it."

youtube.com/watch?v=J0ywwLIfH_w

In a Compelling Documentary, Five Doctors Discuss Being Sick

By David Tuller, DrPH

*This is a crowdfunding period at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120

**********

I first connected with Anil van der Zee, a severe ME patient in Amsterdam, when he reached out almost ten years ago to invite me to talk at an event he was organizing in Amsterdam. In his former life, Anil was a ballet dancer. Now, from his bed, he creates compelling and often visually stunning videos about various aspects of life with ME, and related issues.

In this new documentary, Anil talks with five doctors about living with ME and other chronic illnesses–and about how their personal experiences have altered their perspectives on the medical field and the provision of health care. I have posted it below, along with Anil’s introduction. (I wrote a story about doctors with Long Covid for Codastory.com in 2022.)

**********

Doctors as Patients…Anil van der Zee

In this film, five medical doctors open up about living with #PAIS/#IACC, conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!

They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.

This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it.

We’re amateur filmmakers (and I’m definitely the biggest one!), so don’t expect a slick Hollywood production. The real professionals here are the doctors—whose powerful voices, shaped by both medical training and lived experience, definitely need to be heard.

I invite you to watch, leave a like, drop a comment on YouTube to help boost the algorithm, and share it far and wide. This is more than a film—it’s a message the world needs to hear and see!!!

Their stories will hopefully change how you think about medicine—don’t miss it. Watch it, feel it, and let it shift your perspective, especially now that PAIS/IACC conditions have become an even more urgent health issue since the pandemic. Their voices matter more than ever!

The film has English and Dutch subtitles. If you want to translate it to another language let me know.

**********

(View the original post at virology.ws)

UC BerkeleyDavid Tuller's Trial by Error Spring 2025Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!