#postviralillness — Public Fediverse posts

Well worth reading this article, especially if you've experienced medical gaslighting, minimizing, dismissal, or abuse. And if you haven't, still worth reading -- the chronic illness and disability communities are two that any person can join at any time, without warning.

https://drzedzha.substack.com/p/the-patient-with-the-splinter

#LongCovid #ComplexChronicIllness #MECFS #undiagnosedillness #IACC #InfectionAssociatedChronicConditions #PostViralIllness #spoonie #disability #medicalgaslighting

Join our allies Millions Missing BC this Saturday, May 10 to demand safe & adequate medical care for people with #MECFS & #LongCovid! Raise your voice in-person (& in N95s) at Jack Poole Plaza in Vancouver, catch the livestream, or submit a message for them to send to policy-makers. RSVP or send your message: https://forms.gle/uWWfUx34VNNXhhAW9

You can also find more access info & invite others through the FB event: https://facebook.com/events/s/millions-missing-vancouver-202/1370629570640827/

#MillionsMissing #MillionsMissing2025 #pwME #LongHaulers #PostViralIllness #BCHealthcare

2025_1_20 environmental allergies triggered (MCAS)

MCAS, or mast cell activation syndrome, is a common post-viral illness which can give severe, dangerous allergic reactions even to people who had no allergies previously, like me.

A few days ago I tried to clean out my old apartment, which we’d removed the air purifiers from, and immediately broke out in rashes and hives. I was mentally struggling and afraid. When I remembered I had a KN95 mask in the car, it helped a lot, but MCAS is a deeply terrifying and hard to understand condition.

There are resources in my about page about MCAS, but here are a few:

Broadwaybabyto’s “Welcome Guide” to MCAS:

– When You’re Allergic to Everything and Nothing… That’s MCAS (MCAS pt 1)

– MCAS and Histamine – Diet isn’t the ONLY Answer(MCAS pt 2)

And two other blogs dedicated to Mast Cell condition information:

– Mast Attack (Blog, on Mast Cell Conditions)

– Jodie Ettenberg’s Mast Cell Activation Syndrome Resources (Blog, on Mast Cell Conditions)

https://www.illmarks.com/2025_1_20-environmental-allergies-triggered-mcas/

#bodyHorror #chronicIllness #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #postViralIllness #pwLC #pwme

2025_1_20 environmental allergies triggered (MCAS)

MCAS, or mast cell activation syndrome, is a common post-viral illness which can give severe, dangerous allergic reactions even to people who had no allergies previously, like me.

A few days ago I tried to clean out my old apartment, which we’d removed the air purifiers from, and immediately broke out in rashes and hives. I was mentally struggling and afraid. When I remembered I had a KN95 mask in the car, it helped a lot, but MCAS is a deeply terrifying and hard to understand condition.

There are resources in my about page about MCAS, but here are a few:

Broadwaybabyto’s “Welcome Guide” to MCAS:

– When You’re Allergic to Everything and Nothing… That’s MCAS (MCAS pt 1)

– MCAS and Histamine – Diet isn’t the ONLY Answer(MCAS pt 2)

And two other blogs dedicated to Mast Cell condition information:

– Mast Attack (Blog, on Mast Cell Conditions)

– Jodie Ettenberg’s Mast Cell Activation Syndrome Resources (Blog, on Mast Cell Conditions)

https://www.illmarks.com/2025_1_20-environmental-allergies-triggered-mcas/

#bodyHorror #chronicIllness #longCovid #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #postViralIllness #pwLC #pwme

Vagus Nerves! Both of them.

Also: can't recommend enough to make a "List" here on mastodon that's just you. Not all my posts show up on my profile and I have no gd clue why.
Not as helpful for older, since you can't search them, but great for "where tf did my toot 3 min ago go?"

https://www.youtube.com/watch?v=wfqhKKITC1w

#VagusNerves #neurology #nerves #nervate #body #human #humans #Biology #science #ScienceMastodon #sci #SciPost #EduTooter #ed #edu #education #EducationForAll #spoonie #ChronicHealth #ChronicPainMemes #ChronicIllnessMemes #PostViralIllness #VeRantDa #VeRamble

new phrase ideas to babytalk the gd doctors:
"I don't have a diagnosis shopping list. I want a treatment menu. That's it."

#spoonie #SpoonieLife #ChronicHealth #ChronicIllnessMemes #ChronicPainMemes #illness #RespiratoryIllness #PostViralIllness #MECFS #LongCovid #Covid #covid19 #CovidIsNotOver #CovidLong #LongHaulers #LongCovidKids #LongTermCare #health #medicine #badMedicine #medical #MedicalCare #MedicalRecords #clinic #NHS #health #HealthCareWorkers #hospital #sick #doctor #MD #GP #surgery #treatment #pain

X is terrible, but after the Meta news on explicitly allowing transphobia / transmisia, overall it's just been a tough week.
Idk what I have but my asthma attack started last week. Elevated neutrophils indicate bacterial infection, my GP said? So either it was "probably viral" like the OoH 111 GP said and became bacterial as well, or I was unlucky that it was bacterial to begin with.

I've been on Prednisolone, a corticosteroid since the 9th; then last night I started Doxycyline, an antibiotic, and Montelukast.
Montelukast is a leukotriene receptor antagonist, so it blocks leukotrienes, my patient pamphlet says.

Got a chest X ray out of it, at least. (Had back pain behind my ex-gallbladder since its removal anyway.)
Let this be a lesson not to lessen your mask discipline or stubbornness when other people peer pressure you to take risks with your health.
This is my first asthma exacerbation in a decade and I do not want to continue experiencing this. I do not recommend it. The people telling me I was 'paranoid', 'over-thinking it', 'worried about nothing' and more do NOT have to feel what I am feeling.

Teenage boys in public who choose to whine at me and intentionally coughing towards me (what?!!?) is super aggressive, creepy, entitled, and harmful to everyone witnessing that. Still, my upper and mid back has not stopped aching. I don't get fevers and I don't have a cough. Only you know your body.

Some people choose to care about harm reduction; others don't. Do right by yourself and do your sustainable best by others. I believe in you!

https://www.youtube.com/watch?v=My_wEXmNgtA

#sick #illness #RespiratoryIllness #PostViralIllness #ChronicIllnessMemes #virus #bacteria #viral #sickness #infection #InfectionPrevention #pathogen #pathogensAirborneTransmission #infectious #disease #diseases #AsthmaAttacked #AsthmaExacerbation #breathe #breath

X is terrible, but after the Meta news on explicitly allowing transphobia / transmisia, overall it's just been a tough week.
Idk what I have but my asthma attack started last week. Elevated neutrophils indicate bacterial infection, my GP said? So either it was "probably viral" like the OoH 111 GP said and became bacterial as well, or I was unlucky that it was bacterial to begin with.

I've been on Prednisolone, a corticosteroid since the 9th; then last night I started Doxycyline, an antibiotic, and Montelukast.
Montelukast is a leukotriene receptor antagonist, so it blocks leukotrienes, my patient pamphlet says.

Got a chest X ray out of it, at least. (Had back pain behind my ex-gallbladder since its removal anyway.)
Let this be a lesson not to lessen your mask discipline or stubbornness when other people peer pressure you to take risks with your health.
This is my first asthma exacerbation in a decade and I do not want to continue experiencing this. I do not recommend it. The people telling me I was 'paranoid', 'over-thinking it', 'worried about nothing' and more do NOT have to feel what I am feeling.

Teenage boys in public who choose to whine at me and intentionally coughing towards me (what?!!?) is super aggressive, creepy, entitled, and harmful to everyone witnessing that. Still, my upper and mid back has not stopped aching. I don't get fevers and I don't have a cough. Only you know your body.

Some people choose to care about harm reduction; others don't. Do right by yourself and do your sustainable best by others. I believe in you!

https://www.youtube.com/watch?v=My_wEXmNgtA

#sick #illness #RespiratoryIllness #PostViralIllness #ChronicIllnessMemes #virus #bacteria #viral #sickness #infection #InfectionPrevention #pathogen #pathogensAirborneTransmission #infectious #disease #diseases #AsthmaAttacked #AsthmaExacerbation #breathe #breath

X is terrible, but after the Meta news on explicitly allowing transphobia / transmisia, overall it's just been a tough week.
Idk what I have but my asthma attack started last week. Elevated neutrophils indicate bacterial infection, my GP said? So either it was "probably viral" like the OoH 111 GP said and became bacterial as well, or I was unlucky that it was bacterial to begin with.

I've been on Prednisolone, a corticosteroid since the 9th; then last night I started Doxycyline, an antibiotic, and Montelukast.
Montelukast is a leukotriene receptor antagonist, so it blocks leukotrienes, my patient pamphlet says.

Got a chest X ray out of it, at least. (Had back pain behind my ex-gallbladder since its removal anyway.)
Let this be a lesson not to lessen your mask discipline or stubbornness when other people peer pressure you to take risks with your health.
This is my first asthma exacerbation in a decade and I do not want to continue experiencing this. I do not recommend it. The people telling me I was 'paranoid', 'over-thinking it', 'worried about nothing' and more do NOT have to feel what I am feeling.

Teenage boys in public who choose to whine at me and intentionally coughing towards me (what?!!?) is super aggressive, creepy, entitled, and harmful to everyone witnessing that. Still, my upper and mid back has not stopped aching. I don't get fevers and I don't have a cough. Only you know your body.

Some people choose to care about harm reduction; others don't. Do right by yourself and do your sustainable best by others. I believe in you!

https://www.youtube.com/watch?v=My_wEXmNgtA

#sick #illness #RespiratoryIllness #PostViralIllness #ChronicIllnessMemes #virus #bacteria #viral #sickness #infection #InfectionPrevention #pathogen #pathogensAirborneTransmission #infectious #disease #diseases #AsthmaAttacked #AsthmaExacerbation #breathe #breath

X is terrible, but after the Meta news on explicitly allowing transphobia / transmisia, overall it's just been a tough week.
Idk what I have but my asthma attack started last week. Elevated neutrophils indicate bacterial infection, my GP said? So either it was "probably viral" like the OoH 111 GP said and became bacterial as well, or I was unlucky that it was bacterial to begin with.

I've been on Prednisolone, a corticosteroid since the 9th; then last night I started Doxycyline, an antibiotic, and Montelukast.
Montelukast is a leukotriene receptor antagonist, so it blocks leukotrienes, my patient pamphlet says.

Got a chest X ray out of it, at least. (Had back pain behind my ex-gallbladder since its removal anyway.)
Let this be a lesson not to lessen your mask discipline or stubbornness when other people peer pressure you to take risks with your health.
This is my first asthma exacerbation in a decade and I do not want to continue experiencing this. I do not recommend it. The people telling me I was 'paranoid', 'over-thinking it', 'worried about nothing' and more do NOT have to feel what I am feeling.

Teenage boys in public who choose to whine at me and intentionally coughing towards me (what?!!?) is super aggressive, creepy, entitled, and harmful to everyone witnessing that. Still, my upper and mid back has not stopped aching. I don't get fevers and I don't have a cough. Only you know your body.

Some people choose to care about harm reduction; others don't. Do right by yourself and do your sustainable best by others. I believe in you!

https://www.youtube.com/watch?v=My_wEXmNgtA

#sick #illness #RespiratoryIllness #PostViralIllness #ChronicIllnessMemes #virus #bacteria #viral #sickness #infection #InfectionPrevention #pathogen #pathogensAirborneTransmission #infectious #disease #diseases #AsthmaAttacked #AsthmaExacerbation #breathe #breath

X is terrible, but after the Meta news on explicitly allowing transphobia / transmisia, overall it's just been a tough week.
Idk what I have but my asthma attack started last week. Elevated neutrophils indicate bacterial infection, my GP said? So either it was "probably viral" like the OoH 111 GP said and became bacterial as well, or I was unlucky that it was bacterial to begin with.

I've been on Prednisolone, a corticosteroid since the 9th; then last night I started Doxycyline, an antibiotic, and Montelukast.
Montelukast is a leukotriene receptor antagonist, so it blocks leukotrienes, my patient pamphlet says.

Got a chest X ray out of it, at least. (Had back pain behind my ex-gallbladder since its removal anyway.)
Let this be a lesson not to lessen your mask discipline or stubbornness when other people peer pressure you to take risks with your health.
This is my first asthma exacerbation in a decade and I do not want to continue experiencing this. I do not recommend it. The people telling me I was 'paranoid', 'over-thinking it', 'worried about nothing' and more do NOT have to feel what I am feeling.

Teenage boys in public who choose to whine at me and intentionally coughing towards me (what?!!?) is super aggressive, creepy, entitled, and harmful to everyone witnessing that. Still, my upper and mid back has not stopped aching. I don't get fevers and I don't have a cough. Only you know your body.

Some people choose to care about harm reduction; others don't. Do right by yourself and do your sustainable best by others. I believe in you!

https://www.youtube.com/watch?v=My_wEXmNgtA

#sick #illness #RespiratoryIllness #PostViralIllness #ChronicIllnessMemes #virus #bacteria #viral #sickness #infection #InfectionPrevention #pathogen #pathogensAirborneTransmission #infectious #disease #diseases #AsthmaAttacked #AsthmaExacerbation #breathe #breath

New factsheet from The Sick Times team:

"What are fatigue and Post-Exertional Malaise (PEM)?"
https://longcovidjustice.org/PEM

3-page PDF:
https://longcovidjustice.org/wp-content/uploads/PEM-LCE-series-2024.pdf

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PostExertionalMalaise #ChronicFatigue #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness

2024_10_4

https://www.illmarks.com/2024_10_4-aching-beneath-my-shoulder-blades/

#advocacyArt #bodyHorror #chronicIllness #disabilityArt #disabled #longCovid #medicalArt #MillionsMissing #postViralIllness #pwLC #pwme

New pre-print from Taiwan:

How post-infection status could lead to the increasing risks of #chronicfatiguesyndrome & the potential mechanisms: A 17-year population-based Cohort study

Free:
https://assets.researchsquare.com/files/rs-3289981/v1/55890598-6f0d-4f73-a9f4-5349e07baac0.pdf?c=1693414746

"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"

@mecfs

#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE

May 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"

https://www.nih.gov/news-events/news-releases/nih-study-identifies-features-long-covid-neurological-symptoms

This in-depth study was run by Avi Nath who also is leading the in-depth NIH ME/CFS study using a similar format

@longcovid #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness

"Self-Tracking to Do Less: An Autoethnography of #LongCOVID That Informs the Design of #Pacing Technologies"

Free
https://dl.acm.org/doi/pdf/10.1145/3544548.3581505

#EnergyManagement #Spoonie #EnergyConservation #MEcfs #CFS #PwME #MEeps #PostViralFatigueSyndrome #PVFS #postviralillness @mecfs @longcovid

A social and medical examination of Long COVID as a “mass disabling event”: Part 4 - World Socialist Web Site
Hash tag list:
#Covid
#LongCOVID
#MassDisablingEvent
#Coronavirus
#MERS
#SARS
#RussianFlu
#Flu
#PostViralIllness
#CFS
#ME
#SpanishFlu
#Shingles
#Chickenpox
#Ebola
#EpsteinBarrVirus
#Trotsky
https://www.wsws.org/en/articles/2023/04/08/long-a08.html

New from Poland:

Study examining the prevalence of 8* out of the 9 symptoms of #CFS (Fukuda criteria) following #Covid19.

CFS symptoms tended to be higher in women (similar to CFS itself which is more prevalent in women)

Free:
https://onlinelibrary.wiley.com/doi/10.1002/brb3.2849

*all but cognitive symptoms

#LongCovid @longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #postviralillness #PostViralFatigueSyndrome #PostViralSyndrome #PVFS

2/
""Isolation in #longCOVID comes in various forms and it's not primarily just that physical isolation," says Yochai Re'em, MD..."A different yet equally challenging type of isolation is the emotional isolation, where you need more emotional support, connection with other people who can appreciate what it is you are going through without putting their own needs and desires onto you — and that can be hard to find"

@longcovid #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon