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?
I think she’s my new hero. Violet Affleck, “I was surprised at her [my mother’s] surprise: as a lifelong Angelena and climate-literate member of generation Z, my question had not been whether the Palisades would burn but when.” #climate #ClimateChange #COVID #COVID19 #LongCovid #masking #YallMasking #CovidIsNotOver #mecfs #pem
#LongCOVID #PhysicsGirl #ME/CFS #PEM
The first update from Diana's point of view, in her own voice. A very active, fit, energetic young woman--the type of people were told ad nauseam was "safe" from COVID--has been bedridden for YEARS, and developed a terrible chronic illness.
Weiter geht es mit meinem Blog auf longcovidonline.at >>
„Eine kleine Erdbeere reicht, um Tage zu leiden“
https://longcovidonline.blog/2025/05/22/mcas_erdbeere-reicht-um-tage-zu-leiden/
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"
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A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles – Yale Global Health Review
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:
https://www.youtube.com/watch?v=wxSwYUennBA
3/n
For #MECFSAwarenessDay here are a few of my #symptomatology #embroidery pieces showing some of the invisible symptoms of #MECFS: paresthesias, pain, brain fog, and post-exertional malaise (#PEM)
Read more about ME/CFS (and contribute towards a good cause) here: https://operamariposa.com/benefit-awareness/
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.
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."
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
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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.)
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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.
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The thing that gets me is that even enjoyable activities that aren't particularly strenuous or stressful (IDK why I'm alliterating, sorry) -- driving, talking on the phone -- can trigger PEM.
And while I have not had "vampire bite"- or "welded to the bed"-level PEM in a while, I have had days where I really and I mean REALLY don't feel like doing anything.
Hey! Are you in the USA? Do you (or someone you know) have any of:
which started or worsened after a bout of acute COVID-19?
Trials are open for treatments for these symptoms!
Those interested in participating in the trials can contact the clinic for screening to see if they are eligible. The team can be reached via email at covidtrialsuva@uvahealth.org, or by phone at 434-243-4008 or toll-free at 855-882-5334.
and they seem like good folks:
“We see patients coming in who are frustrated because they look fairly normal, but they cannot fully function and are not being believed,” she said. “So, for those people, I want to say this is truly a disease and you are not imagining anything.”
While UVA is in Virginia the article suggests it is a USA-wide national study.
https://news.virginia.edu/content/uva-health-takes-aim-long-covid-two-national-clinical-trials
If your doctor, or the doctor of someone you know, is still suggesting exercise therapy for CFS or fatigue in general, that recommendation has now officially had peer review label it
Outdated and misleading content; review unsuitable for clinical decisions
the full review: https://hbprojecttalk.wordpress.com/2025/03/13/iag-submission/
main author https://mastodon.online/@hildabast h/t @tomkindlon
My cat is great for fighting PEM. He gets angry anytime I try to wipe things down in the house and proceeds to attack or maybe he's trying to help?
Volle dag vandaag... Half uurtje strijken, uurtje kleine snoei, drie kwartier aan de foon met collega en dan zo een kleine kookactie. #PEM stresstestje met de nieuwe dosis LDN. Energiebudget van 2 uur naar 3 uur?
Iets ruimte gekregen in vergelijking met het laatste kwartaal 2024. Iets meer stappen op een dag en wat vaker weer rondje hondje. En vandaag met die zon is dat wel heel lekker (zonder bankjes-break EN mn hartslag onder 95 weten te houden).
Gister begonnen met LDN. Benieuwd wat dat gaat doen.
My #LongCovid life with #POTS and #PEM
Explanation of method of pacing (with tools) for everyone who suffers adverse effects after any exertion (mental, social, physical, emotional).
https://youtu.be/ssqBD1-AcII?si=TcBs3g-odeaZpEgk
#LongCovid #PEM #PESE @longcovid
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#NowPlaying Bot 
Awe
