#mcas — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #mcas, aggregated by home.social.
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Alright fedi hive mind, I have a challenge for you. I am looking for resources that explain ME/CFS and/or MCAS to a South Asian audience, to support a friend in explaining her needs to her family (immigrants in Canada). This has already stumped several South Asian people with ME, but I am asking just in case one of you has a special video or PDF or Facebook group hookup. Thank you for any leads!
Boosts welcome :)
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my reading for today:
Allergic comorbidities in fibromyalgia [2025]
https://pubmed.ncbi.nlm.nih.gov/40011987/The article is paywalled, but I was able to gain access through my public library's databases.
One thing not mentioned in the abstract is that smoking was more prevalent in the fibromyalgia group, and the higher rate of asthma among people with fibromyalgia may be attributable to smoking. It's a pity they did not control for smoking in the analysis.
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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 -
Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
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This summer has been so rough in the #Edmonton area with all the rain. I've been getting a lot of migraines, pain, and fatigue that has been hard to deal with. I actually splurged on some compression socks even though I haven't worn them for a couple years. They definitely help with the swollen feet and dizziness.
My mother-in-law gave me some old walker she had laying around outside, I swallowed my pride and I took it to K-days. (the place where I first suspected I had POTS in 2019, I went on a swingy ride and was screaming because my feet felt like they were going to explode) It was amazing to be able to sit or lean on something whenever I got dizzy or sore. There was not a lot of seating this year, especially at the bbno$ concert, so I was thankful I had it. I was not in as much pain the next day as I could have been, I think. It's hard to admit I need stuff like that, but it made one of the few days I could get out and have fun 100x more enjoyable. So fuck what anyone thinks, I'm using my walker when I need it. (and am looking forward to decorating it, it's pretty scuffed up)
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CW: lung-esophagus axis? sauerkraut is magic?
I've been having symptoms consistent with eosinophilic esophagitis FIRE syndrome for some time. There are foods that seem to trigger a reaction only sometimes; the threshold for reactivity seems to move up and down. Exposure to lung irritants seems to be a key factor in moving the threshold downwards.
I worked outside in a public garden today for a couple of hours without a mask, not realizing the air quality was poor. I recently had success eating foods that I sometimes react to with sauerkraut (I have no idea what's going on there), including rice - a food I had 'lost' and then regained, then lost again. I tried the rice with sauerkraut thing and was disappointed to find that today I had to eat *a lot* of sauerkraut to swallow it without too much pain.
I decided to sit outside on the patio after, but only for a few minutes as I looked over at our air monitor and found it was yellow-orange - then I realized I had been breathing bad air for a while today. It only just now started to smell like smoke.
"About 10 years ago, Virchow defined EoE as “asthma of the esophagus” "
https://www.mdpi.com/1999-4923/15/9/2359Th sauerkraut thing is weird since it is acidic and the thing that helps me quell an acute reaction is baking soda water. I thought it had to do with the alkalinity calming mast cells. 🤷♂️
#MCAS #EosinophilicEsophagitis #AirPollution #Asthma #sauerkraut
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I looked up a health vlogger I used to follow on YT and found he posted a video a couple of months ago after a long hiatus. Jeffrey Lin has a congenital condition that causes super-high serum IgE levels (not sure if it's HIES). I hope he can vlog more soon - I used to appreciate his product reviews of 'sick gear' (masks, HEPA filters, etc.) and Rx drugs. Perhaps more traffic to his video will inspire him to do more vlogging -
I'm BACK! Needed a BREAK from ILLNESSES & TREATMENTS... | Jeffrey Lin
1 May 2026
https://youtu.be/bobaQNrJ9RA -
CW: Glp1 (like ozempic) for medical reasons, weight, doctors being shit
This video is on GLP-1 for histamine intolerance/MCAS; there was a case of a 100 lbs woman that gained weight, presumably since she was able to eat more:
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Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund
RE: https://plasmatrap.com/notes/aoctlai1vp -
Habe in den letzten Wochen aus dem Bett heraus mit Otto Kölbl und Florian Heigl noch diesen Text geschrieben:
"Verkannt, verleugnet, vergessen: Die grausame Behandlung komplex chronisch Kranker"
Bitte lest und teilt ihn.
Danke euch allen. Passt auf euch auf. Und geht auf die Straße gegen die f*ck AfD. In Gedanken bei euch!
#MEcfs #LongCovid #Postvac #POTS #SFN #MCAS #CCI #FQAD #Lyme
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Intro message update x3!
I'm located north of Portland, OR (#PDX). I'm an infosec technical editor and educator by day, #disability researcher and plant nerd by night.I'm a big fan of growing #PerennialVeg and specializing in foods/plants native to the area where I live. I'm turning my smallish yard from a very flat lawn into a mix of native plants and edibles from near and far. #Gardening #FoodForest
Still very much taking Covid seriously (#CovidIsNotOver) even though that's now a hella lonely proposition. I'm mostly homebound from #MECFS #MCAS #POTS #Dysautonomia and trying to aggressively rest my way back to functionality.
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I came across a new BPSM term today - 'neuroplastic' (as in 'MCAS is neuroplastic') - not really a new term, but new in this context. Another way of saying you can think yourself better.
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· Two recent studies added more evidence that diabetes drug #Metformin can reduce risk of #LongCOVID
[https://link.springer.com/article/10.1007/s40121-026-01362-z | https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciag335/8702406]
· Long COVID disproportionately impacts Indigenous people in California
[https://www.researchsquare.com/article/rs-9452333/v1]
· 2020 diagnostic consensus on #MCAS (which can get triggered by #COVID) enabled diagnosis & improved treatment of the condition
[https://www.degruyterbrill.com/document/doi/10.1515/dx-2026-0016/html]https://thesicktimes.org/2026/06/16/research-updates-june-16/
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Kurzes Update.
Geht mir leider wieder schlechter. Kann nur ca. 1x/Woche das Haus mit Hilfe verlassen und liege ca. 20-22h/Tag. Der Abwärtstrend begann bereits im Februar.
Das Foto ist von vorgestern, da konnte ich mich mal schminken.
Ich grüße alle, die mich noch lesen!
🫶
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CW: Non-Financial Mutual Aid Request, seeking information
We are a plural collective with a form of mast cell disorder. We know this due to antihistimine medication and diet being enough to seriously reduce our symptoms, however we have yet to fully adress and stabilize them.
One of those symptoms is a form that no individual we've met or heard of, so far, has any direct knowledge of. We are seeking information on it, both so we can better adress it, and so we can better discuss it with others and ourselves.
When we are having a histamine reaction, or histamines are too built up in our body. Some combination of our symptoms results in heightened fear, as we understand is typical for epinephrine reactions.
For us, uniquely. This also comes with extremely heightened paranoia, sensitivity, and defensiveness. Which is what we cannot fully understand. Even if we know it might be coming, and even if we prepare for it ahead of time, we are not sure what if anything we can do to prevent us from causing harm as result of this. (Beyond extreme over-compensation like 24/7 psychiatric drugs, even when not having a reaction)
This state of mind seems to sneak up on us and cause us to act out, over-reacting, toward percieved threats (real and not) before we can stop it. Before we can calm ourselves down enough to be concious of our state of being.
It is extremely difficult for us to differentiate this state from legitimate c-PTSD panic attacks and anger, even to the point of not being sure if we've ever had the latter.
In theory someone living with us should be able to spot it, or maybe even a support animal. But we cannot obtain either in our current living situation.We have met and heard from others with mast cell disorders who say a panic attack kind of state is a common reaction to histamines for people with them.
But none have recognized our extreme paranoia- the often seemingly irresistible compulsion, to falsly see someone/thing else as the cause of the entire reaction. Which always ends when we remove enough histamines (via diet and medication).Let alone been able to advise us on how to handle our emotional reaction to this in the moment and after, or how to discuss this with others.
So what is this? Can anyone please help us understand this?
Thank you!
#MutualAidRequest
#MutualAid
#MCAS
#MCAD
#Immunology
#Neurology@QuyetPawz @wrzky
@posts @[email protected] @[email protected] @MutualAidNet @mutualaid @MutualAidVisibility
@[email protected] @[email protected] -
“Ok body the specialist diagnosed me with a new chronic infection that’s been raging and misdiagnosed for years, let’s get these treatments started!”
#MCAS: I hear you but I’m going to respond with severe contact dermatitis because what if YOU are the chronic infection trying to fool me?
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Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Venmo: @bohe2389
Cashapp: $bohe2389#MutualAid #MutualAidRequest #DisabledAid #Pride #TransCrowdfund
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Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$60/150 allergy-friendly cat food and litter
$28/60 human meds
$0/60 allergy-friendly dog food
$260/260 dog heartworm and flea/tick prevention meds
Venmo: @bohe2389
Cashapp: $bohe2389 -
Please boost: My spouse can no longer work due to #MultipleSclerosis, #MCAS and other complications; please help our queer family survive.
https://chuffed.org/project/kat
Our most urgent needs:
$60/150 allergy-friendly cat food and litter
$28/60 human meds
$0/60 allergy-friendly dog food
$260/260 dog heartworm and flea/tick prevention meds
Venmo: @bohe2389
Cashapp: $bohe2389 -
A note to folks with #ChronicIllness and #MCAS
Maybe not widely known, but you can be having reactions to seasonal allergies that _don't_ include head congestion. As in, you can just be tired and fatigued, and that can be allergies, even if you don't have an obvious runny nose. If you have MCAS and you notice that your histamine bucket is full and you're suddenly reacting to everything you eat (even the safe foods), this could be why!
We happen to live in an area with a lot of pollen. I've been taking an allergy pill (I'm trying Claritan right now) and it seems to be helping my recent downturn. Thought I'd spread the word.