Die Maske bleibt auf!
Solidarität mit #Schattenfamilien
Does it ever seem like symptoms get worse when you start to reflect on how much you've done lately and think maybe you're doing too much? Sometimes I wonder if tracking symptoms makes them worse. I also have had pem when I'm not thinking about it at so I don't know if it's coincidence.
It was unusually hard to wake up this morning. Could be change of weather, not taking propanolol for over 24h, who knows! This #longcovid is sometimes predictable, sometimes not!
Surviving in max 3 hours sleep.
Do not recommend.
Recommendations on which Garmin smartwatch to buy for health monitoring are very welcome as well #garmin #LongCovid #mecfs
Considering buying a Garmin watch because they seem to have the best options for monitoring LongCovid/ME/CFS related stuff. I plan to connect it to my phone with GrapheneOS with Gadgetbridge to share as little data as possible with third parties. Anything else I should/could do to protect my privacy as much as possible? #privacy #garmin #gadgetbridge #grapheneos #LongCovid #mecfs
Trial by Error by David Tuller Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric" by @david
Image is from the Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
"Bateman Horne Center (BHC) has removed a controversial recommendation of brain retraining from their clinical guide..."
https://mitteremitage.wordpress.com/2025/07/19/bhc-tar-bort-rekommendationen-om-hjarntraning/
Image is from the Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Optician appointments are tough with ME!
Mine lasted 70 minutes yesterday with feet on floor and lights shined into eyes, along with having to concentrate, etc.
I lay in car until called, minimal walking (10m before & 20m at end) but still feeling effects.
I have just donated to "What Doesn't Kill You" https://whatdoesntkillyou.movie/
Documentaries can be a powerful way to raise awareness & understanding along with empathy.
After looking at some clips and reading this https://www.s4me.info/threads/what-doesnt-kill-you-forthcoming-documentary.45051/ , I'm hopeful this will be good.
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME
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The person passing on the time information has said they got mixed up: the interview on Shannonside/Northern Sound is on Monday July 21 at 10:10am not 9:50am
#MEcfs #MyalgicEncephalomyelitis
@mecfs
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“Few patients suffering from long-haul COVID-19 (& the millions of patients with undiagnosed ME/CFS) realize the long road ahead of them. We currently have no curative treatment, & no means to rachet back down the immune system that is jammed in overdrive,” says Dr Herman”