Create accountLogin

Recent searches

No recent searches

Search options

Only available when logged in.
eupolicy.social is one of the many independent Mastodon servers you can use to participate in the fediverse.
This Mastodon server is a friendly and respectful discussion space for people working in areas related to EU policy. When you request to create an account, please tell us something about you.

Administered by:

Server stats:

216
active users

eupolicy.social: AboutProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.8

#mcas

4 posts4 participants0 posts today
Emily Johnson<p>Just saw a doctor saw his <a href="https://disabled.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> patient’s hair loss improved after he told her to put Cromolyn in shampoo, dropping this advice here for anyone else who needs this information</p>
Juchti<p>Hanna hat in der kommenden Woche Geburtstag, sie wird 36. Es wird der dritte Geburtstag sein, an dem sie - bettlägerig - verzweifelt versucht, für eine lebensnotwendige OP zu fundraisen. Sie braucht eine Fusions-OP. Hanna hat <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a>, <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> und <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a>, also eine instabile Halswirbelsäule. Sie braucht unsere Unterstützung. Bitte teilt ihren Fundraiser. Ich verlinke weitere Infos und (Zeitungs)Artikel zu Hanna im 🧵<br><a href="https://mastodon.social/tags/hopeforhanna" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hopeforhanna</span></a> </p><p>FUNDRAISER-Link: ⬇️<br><a href="https://www.gofundme.com/f/cgexg-hope-for-hanna" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">gofundme.com/f/cgexg-hope-for-</span><span class="invisible">hanna</span></a><br>1/</p>
Juchti<p>Falls ihr die Doku "Chronisch krank, chronisch ignoriert" noch nicht gesehen habt, schaut euch den Trailer an. Keine zwei Minuten ist er lang, und ihr bekommt eine Idee. </p><p><a href="https://youtu.be/S8bqB9Do5fI?si=wgykbEV1u5SY-vRp" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/S8bqB9Do5fI?si=wgykbE</span><span class="invisible">V1u5SY-vRp</span></a></p><p><a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> <a href="https://mastodon.social/tags/FQAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FQAD</span></a> <a href="https://mastodon.social/tags/longlist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longlist</span></a> <a href="https://mastodon.social/tags/longtragedy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longtragedy</span></a></p>
Juchti<p>Please share this widely! ‼️ ⬇️🧵</p><p>The film "Chronically Ignored" will be available online for the first time internationally, starting Friday, June 6th, at 9 a.m (German Time). The link will be this one here: <br><a href="https://vimeo.com/ondemand/chronicallyignored" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">vimeo.com/ondemand/chronically</span><span class="invisible">ignored</span></a></p><p>"Chronically Ignored" is an investigative documentary about a dark chapter in the history of medicine.<br>1/</p><p><a href="https://mastodon.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.social/tags/ChronicallyIgnored" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIgnored</span></a> <a href="https://mastodon.social/tags/greatestMEdicalscandal" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>greatestMEdicalscandal</span></a> <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://mastodon.social/tags/FQAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FQAD</span></a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> <a href="https://mastodon.social/tags/SFN" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SFN</span></a> <a href="https://mastodon.social/tags/MEawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEawareness</span></a></p>
Juchti<p>Ich habe heute auf den social media Kanälen, wo die entsprechenden Orgas sind (Insta, FB, X, Bluesky), die Patient*innenorgas und Research Foundations für <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> um folgendes gebeten: </p><p>"Benennt und erwähnt auf euren Websites die sogenannten "Komorbiditäten" und Co-Faktoren vieler Patient*innen mit ME-Diagnose. Dazu gehören <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, <a href="https://mastodon.social/tags/hEDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hEDS</span></a>, <a href="https://mastodon.social/tags/Marfan" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Marfan</span></a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://mastodon.social/tags/SFN" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SFN</span></a>, <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a>, <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> <a href="https://mastodon.social/tags/FQAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FQAD</span></a>, <a href="https://mastodon.social/tags/Lyme" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Lyme</span></a>, <a href="https://mastodon.social/tags/MCS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCS</span></a> und mehr. <br>1/<br><a href="https://mastodon.social/tags/naME_it" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>naME_it</span></a>!</p>
Juchti<p>Ich würde gerne im Bundestag sprechen. Dafür würde ich meine letzte Kraft zusammennehmen. Vermutlich blieben die Ränge bei diesem Thema leer, gut möglich auch, dass so etwas gar nicht machbar ist. </p><p>Ich würde das gut machen, das weiß ich. </p><p><a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> <a href="https://mastodon.social/tags/longlist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longlist</span></a></p>
Juchti<p>Ich kann euch nur eines sagen: Seit ich hier in diesem Bett liege, seit fast zwei Jahren, nachdem sich mein Leben von einem Tag auf den anderen komplett verändert hat, ich nach einer Infektion schwer mit <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> und einer instabilen Halswirbelsäule <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> erkrankt bin: </p><p>Nichts ist selbstverständlich. Gar nichts.</p>
illmarks <p></p><p>2025_5_6 Eternal Suffering of the Mast Cell</p> <p><a href="https://www.illmarks.com/2025_5_6-eternal-suffering-of-the-mast-cell/" class="" rel="nofollow noopener noreferrer" target="_blank">https://www.illmarks.com/2025_5_6-eternal-suffering-of-the-mast-cell/</a></p><p><a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/art/" target="_blank">#art</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/autoimmune/" target="_blank">#autoimmune</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/body-horror/" target="_blank">#bodyHorror</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-illness/" target="_blank">#chronicIllness</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/long-covid/" target="_blank">#longCovid</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mast-cell/" target="_blank">#mastCell</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mast-cell-activation-syndrome/" target="_blank">#mastCellActivationSyndrome</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mastcell/" target="_blank">#mastcell</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mcas/" target="_blank">#mcas</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/millionsmissing/" target="_blank">#MillionsMissing</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwlc/" target="_blank">#pwLC</a> <a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwme/" target="_blank">#pwme</a></p>
Barbara Wimmer - shroombab<p>Trotzdem ist und bleibt MCAS eine Multisystemerkrankung, bei der Mastzellen übermäßig aktiv werden und Entzündungsmediatoren freisetzen, was zu entzündlich-allergischen Symptomen im ganzen Körper führt - und damit kein "Kindergeburtstag". </p><p>(2/2) </p><p>Mehr auf longcovidonline.at</p><p><a href="https://chaos.social/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://chaos.social/tags/histaminintoleranz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>histaminintoleranz</span></a> <a href="https://chaos.social/tags/ern%C3%A4hrung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ernährung</span></a> <a href="https://chaos.social/tags/gesundheit" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gesundheit</span></a> <a href="https://chaos.social/tags/krankheit" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>krankheit</span></a> <a href="https://chaos.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://chaos.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://chaos.social/tags/karottensuppe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>karottensuppe</span></a> <a href="https://chaos.social/tags/haferbrei" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>haferbrei</span></a> <a href="https://chaos.social/tags/kartoffeln" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>kartoffeln</span></a> <a href="https://chaos.social/tags/rotebeete" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>rotebeete</span></a> <a href="https://chaos.social/tags/paprika" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>paprika</span></a></p>
Barbara Wimmer - shroombab<p>Oft bekomme ich die Frage, ob man den gegen <a href="https://chaos.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> gar nichts tun könne. </p><p>Das Mastzellaktivierungssyndrom (<a href="https://chaos.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a>) ist ein Teilaspekt, der sich tatsächlich behandeln lässt: mit strikter histaminfreier Ernährung, mit einer Lebensstiländerung (kein Stress!) und mit den richtigen Medikamenten. Trotzdem kommt es immer wieder zu "Mcas-Flare-Ups". </p><p><a href="https://longcovidonline.at" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">longcovidonline.at</span><span class="invisible"></span></a></p><p>(1/2)</p>
Barbara Wimmer - shroombab<p>Weiter geht es mit meinem Blog auf longcovidonline.at &gt;&gt;</p><p>„Eine kleine Erdbeere reicht, um Tage zu leiden“ </p><p><a href="https://longcovidonline.blog/2025/05/22/mcas_erdbeere-reicht-um-tage-zu-leiden/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">longcovidonline.blog/2025/05/2</span><span class="invisible">2/mcas_erdbeere-reicht-um-tage-zu-leiden/</span></a></p><p><a href="https://chaos.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://chaos.social/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://chaos.social/tags/pem" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pem</span></a> <a href="https://chaos.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
alicedrawing4fun<p>Anyone here have experience with severe MCAS? </p><p>I’ve been having more full allergic reactions since the tree pollen increased, can’t even be in my room (with air purifiers) without reacting. Keep needing a mask indoors. It’s really difficult since I’m already bedridden with low energy. It’s so weird how difficult life can be with this! Just looking for some ideas or hope.</p><p>Edit: forgot these <a href="https://mastodon.art/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://mastodon.art/tags/allergies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>allergies</span></a> <a href="https://mastodon.art/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.art/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
JSkier :archlinux: :debian:<p>Apparently, my heat tolerance is way lower than it was last summer (previously 94 F). Running 5 miles in 80 F weather today triggered a mild asthma attack (I always have my inhaler with me), and my heart rate hit 190. The high HR was probably a combination of the temperature outside, pushing too hard, and all the medications I'm on. Classic fuck around and find out 😖</p><p>I will be inside on the treadmill until it's low 70s from now on. </p><p>Looking forward to starting IgE inhibitor shots in a week or two, hopefully knock down the pre-existing asthma and urticaria, and new severe allergies I now have this spring. Additionally, cut down on the medications I'm on. My doctor is unsure if I have secondary <a href="https://social.linux.pizza/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> from <a href="https://social.linux.pizza/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a>, but those three symptoms, combined with the neurological ones, sure aren't helping my quality of life lately.</p><p>I want to conclude with, I don't believe I have PEM, CFS, or POTS. My recovery plan is to stay as healthy as I can for as long as I can, and is not typical for people suffering from long covid.</p><p> <a href="https://social.linux.pizza/tags/running" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>running</span></a> <a href="https://social.linux.pizza/tags/runnersofmastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>runnersofmastodon</span></a></p>
WearyBonnie<p>I'm only a few minutes in to the latest episode of the Make Visible podcast, but it's really good. If you're interested in long covid &amp; other complex chronic illness with poorly understood pathophysiology, you may like to check it out.</p><p>&gt; Make Visible: Understanding Complex Illness: #14. Wearable technology and patient-led innovation with Dr. David Putrino</p><p>Episode webpage: <a href="https://madevisible.podbean.com/e/14-wearable-technology-and-patient-led-innovation-with-dr-david-putrino/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">madevisible.podbean.com/e/14-w</span><span class="invisible">earable-technology-and-patient-led-innovation-with-dr-david-putrino/</span></a></p><p><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a></p>
Valerie Roney<p>After peeling back my immune meds this winter (because I am getting better yay!) I am now layering some back in for 🤬 allergy season.<br>As it's top of mind these days I'd like to share a list of weird symptoms that can be histamine driven: </p><p>Heartburn<br>Poor sleep<br>Nosedives in mood<br>Loss of appetite, poor digestion<br>Global body pain<br>Rag-doll tired<br>Brain fog <br>Clumsy <br>Weepy or irritable <br>Itchy (no rash)</p><p>Best indicator I have is "histamine flush" across my nose and cheeks. </p><p><a href="https://disabled.social/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://disabled.social/tags/cfsME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cfsME</span></a> <a href="https://disabled.social/tags/longCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longCovid</span></a></p>
conscientious objector🇨🇭🪂<p>Heute vor 5 Jahren, nach dem ersten vom <a href="https://swiss.social/tags/Bundesrat" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Bundesrat</span></a> &amp; <a href="https://swiss.social/tags/SRG" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SRG</span></a> / <a href="https://swiss.social/tags/SRF" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SRF</span></a> ausgerufenen Ende der <a href="https://swiss.social/tags/Corona" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Corona</span></a>-Pandemie, habe ich mich bei Handwerkern mit <a href="https://swiss.social/tags/Corona" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Corona</span></a> angesteckt. Obwohl wir uns, wie vom <a href="https://swiss.social/tags/BAG" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BAG</span></a> empfohlen, die Hände wuschen und sogar 2m Abstand hielten.</p><p>Was folgte waren 12’000 Franken Arztrechnungen, 3 Monate Krankschreibung und 1,5 Jahre krank mit Teilzeit. Zurück blieben <a href="https://swiss.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> und <a href="https://swiss.social/tags/Asthma" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Asthma</span></a>. Verlorenes Vertrauen in Medien &amp; Ärzte und ein verständnisloses soziales Umfeld. </p><p><a href="https://swiss.social/tags/Aufarbeitung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Aufarbeitung</span></a><br><a href="https://swiss.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a></p>
Deer Witch Nyx<p>Anyways cute your sources, here’s a link to the <a href="https://kind.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://kind.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> monthly webinar for emerging treatment recommendations. Next one is about <a href="https://kind.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> on Thursday. </p><p>I haven’t been but someone said good things about Echo (the source) in Long COVID Community. </p><p><a href="https://iecho.org/public/program/PRGM1699044218879IERCAXHJ8Y" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">iecho.org/public/program/PRGM1</span><span class="invisible">699044218879IERCAXHJ8Y</span></a></p>
Juchti<p>Tobias ist schwerstkrank, er hat <a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> und die typischen Komorbiditäten <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> und <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a>. Da es noch keine für ME/CFS zugelassenen Medikamente gibt, muss alles aus eigener Tasche bezahlt werden, was helfen könnte. Tobias ist 24/7 bettlägerig und auf Hilfe angewiesen. Ihm wurde Sterbehilfe gewährt, aber er möchte leben. Vielleicht könnt ihr ihm helfen und diesen Post teilen und/oder spenden. Danke. <br><a href="https://www.gofundme.com/f/help-save-tobias-his-last-hope-to-live?attribution_id=sl:2e84bab4-adc8-414f-852c-1be1335baac1&amp;utm_campaign=natman_sharesheet_dash&amp;utm_medium=customer&amp;utm_source=copy_link" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">gofundme.com/f/help-save-tobia</span><span class="invisible">s-his-last-hope-to-live?attribution_id=sl:2e84bab4-adc8-414f-852c-1be1335baac1&amp;utm_campaign=natman_sharesheet_dash&amp;utm_medium=customer&amp;utm_source=copy_link</span></a></p>
Juchti<p>Ich möchte euch noch auf die Arte-Doku "Chronisch krank, chronisch ignoriert" hinweisen, die die Schwere der multisystemischen Erkrankungen <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> und <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> thematisiert, aber auch die Zusammenhänge zu den Erkrankungen <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a>, <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a>, <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, <a href="https://mastodon.social/tags/FQAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FQAD</span></a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> etc. </p><p>Die Doku ist auf YouTube und in der Arte-Mediathek und zeigt eindrücklich das Leid der Betroffenen. </p><p>Wann passiert endlich etwas?<br><a href="https://youtu.be/YnnDSHPaAsY?si=aSaNk1Mrt0TOyo6i" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/YnnDSHPaAsY?si=aSaNk1</span><span class="invisible">Mrt0TOyo6i</span></a></p>
Barbara Wimmer - shroombab<p>Ich bin jetzt auch im Club "Setzen Sie alle Medikamente ab, machen Sie Bewegung und genießen Sie den Sommer!" gelandet</p><p>-&gt; HNO-Ärztin weigerte sich, meine akute Rachenentzündung zu behandeln, als sie in meiner Akte meine Grunderkrankungen gelesen hatte <br><a href="https://chaos.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://chaos.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://chaos.social/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a></p>
ExploreLive feeds
About