#post-viral-illness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #post-viral-illness, aggregated by home.social.
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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
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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
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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
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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
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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
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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
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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
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New factsheet from The Sick Times team:
"What are fatigue and Post-Exertional Malaise (PEM)?"
https://longcovidjustice.org/PEM3-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 -
Check out dysimmune.nz for the latest #LongCovid #MECFS #PostViralIllness research happening in Aotearoa NZ 🇳🇿.
If you are based in Auckland, consider signing up to be part of a study.
https://dysimmune.nz/our-team/
Hashtags:
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
From Dan the LC Kiwi (not on Mastodon): "Check out http://dysimmune.nz for the latest #LongCovid #MECFS #PostViralIllness research happening in Aotearoa NZ. If you are based in Auckland, consider signing up to be part of a study."
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Scientists say ‘long colds’ may exist and are just as common as long Covid | The Independent
https://www.independent.co.uk/news/health/scientists-queen-mary-university-of-london-university-of-exeter-data-spanish-b2425171.html -
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
"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"
#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE
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As of today the #documentary #film #Unrest, which tells the story of Jen Brea and her experience with #MECFS, is free through this link on #YouTube to stream legally.
It's a #SundanceFilmFestival winner.
#pwME #NEISvoid #longCOVID #PostViralIllness #MedMastodon
#UnrestFilm -
May 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"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
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"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
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I have just donated to David Tuller.
I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years
Donate link: https://bit.ly/40kHhkY
@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome
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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 -
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2. Use validated tools and instruments to appropriately screen all patients who report cognitive symptoms after COVID-19.
3. Current practices to treat ME/#CFS can help guide treatment recommendations for #longCOVID–related cognitive symptoms.
4. Using an individualized patient-centered approach when choosing the appropriate treatment will help meet the patient's needs.
#postviralsyndrome #pwLC
@longcovid @mecfs @cfs #pwme #mecfs #PostViralIllness -
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Good to see the prestigious CDC recognising the overlap:
“Treating #LongCOVID Brain Fog With ME/CFS Guidelines”https://www.medscape.com/viewarticle/989887
(may require free registration)1. Cognitive symptoms, commonly referred to as brain fog, occur in people who had COVID-19, no matter how severe their infection
@longcovid @mecfs @cfs #brainfog #postviral #PostViralIllness #postcovid #brainfog #MyalgicEncephalomyelitis #foggybrain
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“How to help friends and employees living with #LongCovid” (people with #MEcfs would also appreciate such help):
Headings:
- Be compassionate
- Help out around the house
- Help set up medical appointments
- Respect their comfort levels
- Reach out
- Implement work accommodations
- Donate to research
- Participate in research
etc.https://edition.cnn.com/2023/03/09/us/iyw-how-to-help-long-covid-wellness/index.html
@longcovid #postviralfatigue #PostCovid #PostCovid19 #cfs #PostViralIllness #pasc #pwlc
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One year post Covid & my brain functioning still hasn't returned to normal. ☹️
Other possible changes are not so clear-cut given my #MyalgicEncephalomyelitis
Best to avoid Covid infections/re-infections if can. I had had 3 vaccinations (one 10 weeks before) so that didn't "save" me
#LongCovid #PwLC @longcovid #postviral #PostViralIllness #postviralsyndrome #covidbrain
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“Post-exertional malaise in the first few months after a viral infection is usually a red flag for ME/CFS.”
#postviralillness #postviralsyndrome #postexertionalmalaise #mecfs #cfs @longcovid
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“Now, more than ever, we need a robust health system with well-paid staff, and a new focus on the research and treatment of post-viral illness.
Not as a psychosomatic phenomenon, but as a severely disabling physical disease that can and does kill people.”
#myalgicencephalomyeltis #ChronicFatigueSyndrome #PostViral #PostViralIllness #postviralsequelae #PostViralSyndrome #LongCovid @longcovid
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“Research review suggests #longCOVID may last indefinitely for some people and mimic other ailments”
https://medicalxpress.com/news/2023-01-covid-indefinitely-people-mimic-ailments.amp
On the recent comprehensive review paper by Hannah David et al.
#postcovid @longcovid #postviral #postviralsequelae #postviralillness #mecfs #cfs #pots
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Have you signed up to our newsletter?
Would you like to learn more about Long Covid in children?
Our work?
Our team?
How you can support LCK?
Did you know you can find our newsletter archive here?#LongCovidKids #LongCovid #sundayvibes #child #Health #donate #charity #research #newsletter #news #childhood #childhoodillness #PostViralIllness
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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
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One of the most common symptoms experienced by children and young people with Long Covid is extreme exhaustion or 'Energy Limitation'.
This blog looks at how children describe their extreme exhaustion & how they use our Pacing Penguins poster.
#longcovid #longcovidkids #pacing #mecfs #PostViralIllness #penguins #childhood #resources #children #teenagers
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""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
