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
People with ME (myalgic encephalomyelitis) in B.C. are being failed by our provincial health care system. We've been gaslit, dismissed, and ignored. Faced with doctor after doctor who know less about ME than we do. Stuck on a wait list for the Complex Chronic Disease Program for years while our health deteriorated. Our lives upended by a long list of debilitating symptoms, with scant if any medical support. The time for change is now. During the COVID-19 pandemic, thousands more of us have fallen ill with ME. Yet the same dearth of care and treatment options remains. On Saturday, May 10 at 1 pm, we will gather at Jack Poole Plaza to demand that the B.C. government work with us to make a plan to improve patient care for people with ME. Hear from others with ME/CFS and Long Covid, fill out a post card to send to our government officials, and meet with community. If you're able to join us in person, bring your mobility aids, ear plugs, eye masks, support people, etc -- whatever you need to make the demonstration easier on your body. We also hope to have a livestream available for those who are housebound/bedbound, outside of Vancouver, or for whatever reason unable to attend in person. Whether you plan to participate in-person, virtually, or you're not sure yet, please RSVP here. We also ask that you provide us a message to our government officials through this form, and we'll mail it to them on your behalf.
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
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
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
gypsyvegan
DoNoHarm BC
illmarks
Mx Verda
Tom Kindlon