#pem — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pem, aggregated by home.social.
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Never your fault.
Sometimes I choose to push too hard because I want to do something. Sometimes either #Fibromyalgia or #CFS/ME #PEM are just unpredictable so a thing I could do yesterday I can't do today.I hope your latest PEM settles soon.
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I’ve had to put my whole life on pause for a little over a week now, thanks to a pretty severe #PEM crash. No #sewing, no #cooking, no Mastodon, no leaving the house, nothing. Just a lot of rest, insane amounts of sleep and eating nothing but #homemade chicken #soup. (It’s completely my fault; I totally over-exerted myself and should have known better.) #SEID #meCFS
I’m starting to feel a little better today, thankfully. So hopefully by Monday I can start being a little more productive… @mecfs
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ME Research UK:
In the first deep-dive of our weekly Symptom Saturday series, we unpack the reality of PEM – including its multi-dimensional nature, lived experiences, and key insights from research such as associated physiological changes.
Read more: https://tinyurl.com/PEMsymptomsat
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I am usually reasonably content/relaxed. But tonight I am remembering the joy I used to feel and it's sad to think about. This horrible illness makes you feel physically worse when you feel more joy/excitement. It reminds me of reading something in Little House about how adults were supposed to not be overly emotional and I thought "how boring" but that's what avoiding pem asks of you.
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Jason Arday was vilified yet some white professors whose ideas disable+kill #pwME continue untroubled…
@[email protected]
#ME #Chronicillness #LC
#PEM #POTS #LivesWeCannotLive
@[email protected]
@[email protected]
@[email protected]
@[email protected]
@[email protected] -
"Fact Sheet 2: Post-exertional malaise (PEM)"
https://s4me.info/threads/fact-sheet-2-post-exertional-malaise-pem.51745/
3/4
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Using aids and maybe looking/acting different than others expect:
'I don't really care anymore what people think of me.'
'Well, better look silly than feel terrible.'
'I quite enjoy being weird. (..) I hope that everyone can just go out there and be their own weird self after this conversation.'
#physicaltherapy tools to reduce crashes and improve quality of life for:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
CW: PEM
Disclaimer, I'm not an expert, only a reasonably well-informed person.
You don't say what the existing level of support for her so I don't know if all this is in place anyway, but my first thought would be to balance stillness and nourishment.
• Darkened room &/or eye coverings.
• If possible no noise, inc keeping any verbal questions or comments to the minimum necessary & quietly spoken.
• Encourage her to sleep if possible.
• If she's hungry/thirsty, sips of lukewarm smoothie or lukewarm soup (lukewarm meaning close to 37°C, human body temperature, so it's not creating a demand on the body to warm it up or cool it down).
• Consider possibilities of spoon feeding or using a straw, so she has to move as little as possible to eat/drink & doesn't have to sit up.It's not clear to me whether she now has symptoms which might _not_ be PEM. That's tricky, because you don't want to miss something that wants treating in a different way. Any reason to think that, or is it all consistent with worse than usual PEM?
Also how much influence do you have over this? For example are you with her yourself or only able to advise? Would other people be likely to sabotage the low noise & low light due to not thinking it's important?
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Long COVID The Answers: Biological evidence for #LongCOVID, post-exertional malaise (Part I)
https://youtu.be/3IFHSPlFY6E?si=qA6trWOZLuQlCapQ
Dr Funmi Okunola interviews Profs Rob Wüst & Mark Faghy about their work. Duration: 33 minutes. Part 1 of a 2-part podcast special.
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I'm on the bus from North Bay to Toronto and then I'm getting on the midnight flight to UK. I hope the assistance is better than previous times and it doesn't take me a week to recover.
The water was finally properly warm yesterday and I had a good swim with my mom. It seems if I just use my legs my heart rate stays reasonably low. I can't say for definite I won't get pem but it seems promising. Arms need to be strengthened with activities that don't involve much movement I guess.
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I took some Excedrin (us)/panmigrol (uk) yesterday just as it felt like pem was coming on from a swim 22h earlier, as a tension headache, and it seems like it stopped the pem. I've tried it before and it sometimes helps, someimes doesn't. This time I took it straightway so maybe that helped?
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Hello everyone - I’m learning new skills for distributing images and information!
#ME #Chronicillness #LC
#PEM #POTS #LivesWeCannotLive
Click here for digital links
tinyurl.com/2vhxe3mj
If you print the image scan the
QR code for all the links 💙💙 -
Goedemorgen mensen. Onderstaand artikel kreeg ik doorgestuurd van een vriend. Fijne dag!
#pem #PostCovid -
If doctors won’t read the science then we must educate them ourselves. Here’s a handy cut-out-and-dump leaflet for your exercise-obsesses doctor.
#ThereForME
#ME #Chronicillness #LC
#PEM #POTS #LivesWeCannotLive
#MissingMillions
@[email protected]
@[email protected] -
If doctors won’t read the science then we must educate them ourselves.
@[email protected]
@[email protected]
#ME #Chronicillness #LC
#PEM #LivesWeCannotLive
@[email protected]
@[email protected]
@[email protected]
@[email protected]
@[email protected] -
One of this week's coming events -
PRIME Webinar 3: Post-Exertional Malaise (PEM)
Thursday, July 30
2-5 pm GMTAnnouncement:
https://www.actionforme.org.uk/prime-workshop-on-post-exertional-malaise/Registration (Zoom):
https://us02web.zoom.us/webinar/register/WN_l39rWIMYTlqqTF7nXixo1Q#/registrationProgramme:
https://www.actionforme.org.uk/wp-content/uploads/2026/06/PRIME-Webinar-3-Programme-PEM.pdf -
I’m on a tour of my relative’s beds in Canada. Joyous days with my daughter
#ThereForME
@[email protected]
@[email protected]
#ME #Chronicillness #LC
#PEM #POTS
#MissingMillions
@[email protected]
@[email protected]
@[email protected] -
🆘 Een vriendin van mij heeft hoogstwaarschijnlijk ook post/long-covid met POTS en PEM. Ze wordt van het kastje naar de muur gestuurd en als er al hulp is (zoals een kliniek), dan kan ze dat bij lange na niet betalen (want armoede). Van al dat geregel is ze elke keer dagen van slag. De hittegolf van laatst voelde voor haar alsof ze aan het doodgaan was. Ze kan het huis ook niet koel krijgen, wat ze ook doet (incl. airco). Mogelijk nieuwe hittegolf kan echt fataal worden.
Ze vraagt nu vooral iemand die met haar kan nadenken over wat te doen. Ik zelf heb er geen verstand van en kan alleen praktische dingen doen. Dus als mensen ideeën hebben, laat het me weten. Ja dit is een hulpvraag. 😢 🙏🏻
Volkskrant: *Nergens plek voor ernstig zieke postcovidpatiënten: ‘Ik voel me een onbestelbaar postpakketje’*
"Linda Nugteren (39) en Nicole van Keulen (45) hebben allebei al ruim vijf jaar ernstige postcovid. Ze hebben 24 uur per dag zorg nodig, maar er is nergens plek omdat hun ziekte formeel niet blijvend is."
https://www.volkskrant.nl/kijkverder/v/2026/postcovid-longcovid-patienten-revalidatie-ziekenhuis~v3102909 (🆓 https://archive.is/hIzqm)
#PostCovid #LongCovid #Covid #POTS #PEM #MutualAid #Hulpvraag
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RE: https://disabled.social/@tomkindlon/116818845221478590
Press Release Date 05-05-2026
"Australian Leaders Issue Joint Statement on ME/CFS and PEM"
https://natlawreview.com/press-releases/australian-leaders-issue-joint-statement-mecfs-and-pem
2 months late as I am behind with some reading
#MEcfs #LongCovid #PostExertionalMalaise #PEM
@mecfs @longcovid -
· Imaging study in Journal of Primary Care & Community Health identified metabolic dysfunction in brains of people with #LongCOVID who experience #PEM
[https://journals.sagepub.com/doi/10.1177/21501319261458748?__cf_chl_f_tk=oLTPWJtQ8V6ZYyu5Vm8ECT6H3C2c1AcUT9yuzpJvJGc-1782832046-1.0.1.1-j_GPUcfADuXKfirk9s0teDl5GRAkL3.wUNsp09oSTws]· People who have Long COVID are more likely to exit workforce
[https://www.ijidonline.com/article/S1201-9712(26)00548-5/fulltext]· New LC clinical trial will assess the HIV drug Maraviroc in combination with the cholesterol drug Atorvastatin
[https://clinicaltrials.gov/study/NCT06974084]https://thesicktimes.org/2026/06/30/research-updates-june-30/