toad.social

Barbara Wimmer - shroombabLeute, ich muss jetzt wirklich den Staat verklagen. Vom Bett aus! 🛌 Dinge, die ich nie für möglich gehalten hätte. <a href="https://chaos.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://chaos.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://chaos.social/tags/mcas" class="mention hashtag" rel="nofollow noopener" target="_blank">#mcas</a> <a href="https://chaos.social/tags/pots" class="mention hashtag" rel="nofollow noopener" target="_blank">#pots</a>

Kelly's Shenanigans 🇨🇦Food picture: nomato soup

Anti. 🐘"While measuring traits like biomarkers provides doctors and patients with quantitative information, it still does not fully account for this huge linguistic gap. In an ideal world, scientists find a single indicator of a given condition or disease. But finding biomarkers is a long, complicated process — and even if we get that perfect, singular biomarker to diagnose <a href="https://chaos.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCOVID</a> or <a href="https://chaos.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a>, it fundamentally still would not capture the experience of the illness." <a href="https://thesicktimes.org/2025/08/01/as-a-linguist-i-want-to-find-the-words-to-measure-chronic-illness/" rel="nofollow noopener" translate="no" target="_blank">https://thesicktimes.org/2025/08/01/as-a-linguist-i-want-to-find-the-words-to-measure-chronic-illness/</a>

Christina KochDas war 2022. Anstoßen zum Geburtstag draußen in Wiesbaden im Park. Und von <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a>, <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#CCI</a> und <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> hatte ich noch nie was gehört. Was würde ich darum geben, einmal noch in diesem Körper sein zu können. Einen Tag nur.

illmarks Treatment: I am proud to have found ways to keep myself warm in the dark. Thank you for the company. Having you here, to share the darkness, and these cave paintings with, means more than I can say. Happy disability pride month.<a href="https://www.illmarks.com/treatment-keeping-myself-warm-in-the-dark/" class="" rel="nofollow noopener" target="_blank">https://www.illmarks.com/treatment-keeping-myself-warm-in-the-dark/</a><a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/acceptance/" target="_blank">#acceptance</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/art/" target="_blank">#art</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/art-therapy/" target="_blank">#artTherapy</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/body-mapping/" target="_blank">#bodyMapping</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-illness/" target="_blank">#chronicIllness</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-pain/" target="_blank">#chronicPain</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/disability/" target="_blank">#disability</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/disability-pride/" target="_blank">#disabilityPride</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/disabilitypride/" target="_blank">#disabilitypride</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/grief/" target="_blank">#grief</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/healing/" target="_blank">#healing</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/health/" target="_blank">#health</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/long-covid/" target="_blank">#longCovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/longcovid/" target="_blank">#longcovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mcas/" target="_blank">#mcas</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mecfs/" target="_blank">#mecfs</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/medical-art/" target="_blank">#medicalArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/millionsmissing/" target="_blank">#MillionsMissing</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pots/" target="_blank">#POTS</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pride/" target="_blank">#pride</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwlc/" target="_blank">#pwLC</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwme/" target="_blank">#pwme</a>

Barbara Wimmer - shroombabWieder einmal von den Behörden ge***** worden. Die Wut. Die Machtlosigkeit. Die Hilflosigkeit. Alles zusammen echt schlimm. Leute, bitte achtet echt darauf, niemals chronisch krank zu werden. Das, was euch dann blüht, das haut selbst die härtesten endgültig nieder. <a href="https://chaos.social/tags/PEM" class="mention hashtag" rel="nofollow noopener" target="_blank">#PEM</a> <a href="https://chaos.social/tags/PostCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovid</a> <a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://chaos.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://chaos.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a>

Christina KochIch habe am 18.07. sowohl Klaus-Peter Willsch (MdB, CDU, Wahlkreis Rheingau-Taunus/Limburg) als auch diverse Landtagsabgeordnete und Dorothee Bär per Mail zu mir nach Hause zu einem Gespräch eingeladen. Bislang habe ich auf keine der Mails eine Antwort erhalten. Das kann an der Sommerpause liegen. Ich bin gespannt, ob da noch was kommt. <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#CCI</a>

HarryKrischnerMissing Manufacturer-> <a href="https://chaos.social/tags/Pilot" class="mention hashtag" rel="nofollow noopener" target="_blank">#Pilot</a> communication seems to be a problem with <a href="https://chaos.social/tags/boeing" class="mention hashtag" rel="nofollow noopener" target="_blank">#boeing</a> not only with the <a href="https://chaos.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> but also with the <a href="https://chaos.social/tags/LRD" class="mention hashtag" rel="nofollow noopener" target="_blank">#LRD</a>

Kelly's Shenanigans 🇨🇦Continuing on my low histamine <a href="https://yeg.bike/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> journey, I found I can't use any premade broth or boullion, so today I will attempt to make my own boullion. I just bought a whole bunch of fresh veggies, that I'll throw through my food processor in batches, add salt, and freeze. I'll test the actual broth making from the boullion later this week. I've made broth in the past, but boullion appeals to me more for my use cases, and will take up less space in the freezer. <a href="https://bohemianvegankitchen.com/simple-vegetable-bouillon/" rel="nofollow noopener" translate="no" target="_blank">https://bohemianvegankitchen.com/simple-vegetable-bouillon/</a>

BroadwaybabytoAnyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method. Im hangry, dizzy and annoyed since it wasn’t even that old. If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells. Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent. <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener" target="_blank">#mcas</a> <a href="https://zeroes.ca/tags/mastcells" class="mention hashtag" rel="nofollow noopener" target="_blank">#mastcells</a> <a href="https://zeroes.ca/tags/offgassing" class="mention hashtag" rel="nofollow noopener" target="_blank">#offgassing</a>

Christina KochGenau vor zwei Jahren waren mein Freund und ich im Wanderurlaub in Schottland. Drei Wochen sind wir durch schönste Landschaften gewandert, haben Berge erklommen und Täler durchschritten. Am Tag unserer Rückkehr wurde ich krank – und nie wieder gesund. Ich bin seit über einem Jahr 23h/Tag bettlägerig und kann die Wohnung nicht mehr verlassen. <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#CCI</a>

Nyx MirBut, seriously. We do need this kind of art activism, and we need to evolve it in ways which make it accessible for our communities, including bedlife kin.If the idea of forming "a band of individuals united in anger and dedicated to exploiting the power of art to end the [Long Covid & Post-Acute Infection Syndromes] crisis" is exciting to you, hit me up illmarks @ nyx mir . com And, if you or anyone else is doing this work, yes please let me know! <a href="https://vis.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://vis.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://vis.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://vis.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a>

eMiliLeben mit chronischer Krankheit

Christina KochIch lese vermehrt, dass Vulnerable/bereits Erkrankte sich nicht trauen, in der Öffentlichkeit Maske zu tragen, weil sie Angst vor Anfeindung und Übergriffen haben. Deshalb mein Aufruf an alle: Tragt Maske! Aktuell gibt es für <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a>, <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a>, <a href="https://mastodon.social/tags/SFN" class="mention hashtag" rel="nofollow noopener" target="_blank">#SFN</a>, <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#CCI</a> usw keine Heilung! Es gibt Remissionen, aber viele, viele bleiben krank! Auch mit <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a>! Ihr wollt den Scheiß nicht haben! Und ihr schützt euch damit nicht nur selbst, sondern solidarisiert euch mit anderen. ♥️

Kelly's Shenanigans 🇨🇦I made nomato sauce! I'm continuing on my <a href="https://yeg.bike/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> journey and this is my first time trying it. It tastes a lot like tomato soup, and looks bright red, despite no tomatoes. It's mostly carrots, onions, celery, with some beets for colour, and fresh herbs from the garden. Pictured next to jarred tomato sauce for comparison. We're having chicken "parmesan" spaghetti pie, and my son needed a separate casserole anyway because I can't eat the vegan "chicken", and he can't have the meat (he's vegetarian).

Emily Johnson<a href="https://disabled.social/tags/SaltingTheVibes" class="mention hashtag" rel="nofollow noopener" target="_blank">#SaltingTheVibes</a> watching the <a href="https://beta.mstdn.cf/users/dysautonomia" class="u-url mention" rel="nofollow noopener" target="_blank">@dysautonomia@beta.mstdn.cf</a> <a href="https://bird.makeup/users/dysautonomia" class="u-url mention" rel="nofollow noopener" target="_blank">@dysautonomia@bird.makeup</a> conference panels on livestream, IKYK!Another year of excellent clinician lectures and support for patients with <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://disabled.social/tags/OI" class="mention hashtag" rel="nofollow noopener" target="_blank">#OI</a> <a href="https://disabled.social/tags/NCS" class="mention hashtag" rel="nofollow noopener" target="_blank">#NCS</a> <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://disabled.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://disabled.social/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> and moreMiss out registering? Get conference recordings here: <a href="https://dysautonomiainternational.salsalabs.org/2025conferencerecordings/index.html" rel="nofollow noopener" translate="no" target="_blank">https://dysautonomiainternational.salsalabs.org/2025conferencerecordings/index.html</a>

illmarks 2025-6-22 my new medication has been recharging, but I also have big joint pain. <a href="https://www.illmarks.com/2025-6-22-my-new-medication-has-been-recharging-but-i-also-have-big-joint-pain/" class="" rel="nofollow noopener" target="_blank">https://www.illmarks.com/2025-6-22-my-new-medication-has-been-recharging-but-i-also-have-big-joint-pain/</a><a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/body-horror/" target="_blank">#bodyHorror</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-illness/" target="_blank">#chronicIllness</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/long-covid/" target="_blank">#longCovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/longcovid/" target="_blank">#longcovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mcas/" target="_blank">#mcas</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mecfs/" target="_blank">#mecfs</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/med-art/" target="_blank">#medArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/medart/" target="_blank">#medart</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/medical-art/" target="_blank">#medicalArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/millionsmissing/" target="_blank">#MillionsMissing</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pots/" target="_blank">#POTS</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwlc/" target="_blank">#pwLC</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwme/" target="_blank">#pwme</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/sci-art/" target="_blank">#sciArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/sciart/" target="_blank">#SciArt</a>

ContraindiKateHat jemand in Österreich mit <a href="https://wien.rocks/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCOVID</a> <a href="https://wien.rocks/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://wien.rocks/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://wien.rocks/tags/SmallFiberNeuropathie" class="mention hashtag" rel="nofollow noopener" target="_blank">#SmallFiberNeuropathie</a> Erfahrung mit Kassa Bewilligungen für Ketotifen Kapseln? Ich kaufe sie derzeit privat, weil das Medikament für mich ein sehr stabilisierendes Effekt hat. Mehrere Versuchen bei der Kassa seit 2 Jahren würden abgelehnt. Aber das Medikament steht auf der Med Uni Wien Indikations-Medikamentenliste für PAIS und ME/CFS in Österreich, und ich habe Befunde sowie Rezepte von einem Neurologen dafür… ich versuche gerade zu ermitteln, wo genau das Problem steht, bevor mein Geld komplett aus ist.Med Uni Wien Liste <a href="https://www.meduniwien.ac.at/web/fileadmin/content/auftritte/referenzzentrum_postvirale_syndrome/pdf-Dateien/PAIS_MECFS_Medikas_IND_off-label_Version_21.02.2025.pdf" rel="nofollow noopener" translate="no" target="_blank">https://www.meduniwien.ac.at/web/fileadmin/content/auftritte/referenzzentrum_postvirale_syndrome/pdf-Dateien/PAIS_MECFS_Medikas_IND_off-label_Version_21.02.2025.pdf</a>

illmarks Make a Terrible Comic Day, 2025 It’s nice to see how I’ve grown and made peace.<a href="https://www.illmarks.com/make-a-terrible-comic-day/" rel="nofollow noopener" target="_blank">https://www.illmarks.com/make-a-terrible-comic-day/</a><a href="https://www.illmarks.com/make-a-terrible-comic-day-2025/" class="" rel="nofollow noopener" target="_blank">https://www.illmarks.com/make-a-terrible-comic-day-2025/</a><a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-illness/" target="_blank">#chronicIllness</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-pain/" target="_blank">#chronicPain</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/longcovid/" target="_blank">#longcovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/make-a-terrible-comic-day/" target="_blank">#makeATerribleComicDay</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/makeaterriblecomicday/" target="_blank">#MakeATerribleComicDay</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mcas/" target="_blank">#mcas</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mecfs/" target="_blank">#mecfs</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/millionsmissing/" target="_blank">#MillionsMissing</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwlc/" target="_blank">#pwLC</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwme/" target="_blank">#pwme</a>

Kelly's Shenanigans 🇨🇦I've recently decided I likely have <a href="https://yeg.bike/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> (I got a BAD migraine from eating tomato sauce, and I'm hypermobile, AuDHD), and I'm learning to eat a low histamine diet. We're having make your own pizza night. I made a baking powder instead of yeast crust (though I love baking bread and I want to try bringing back yeast bread later), and I'm having beet pesto, kale, and goat cheese pizza. There are definitey things I miss, but I'm starting to feel this might be doable long term.

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