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Curious MagpieQuestion for <a href="https://beige.party/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener" target="_blank">#fibromyalgia</a> <a href="https://beige.party/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://beige.party/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> folks - do you experience chronic sore throat? Thanks?

Christina KochNote an alle, die <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> Erkrankten einen "sekundären Krankheitsgewinn" unterstellen: Checkt mal eure Privilegien. Ich bin bettlägerig, komplett hausgebunden, mit unerträglichen Symptomen. Ich kann nicht nur nicht mehr arbeiten, ich kann gar nichts mehr. Als Lehrerin war ich nicht verbeamtet, meine Rente beträgt ein Fünftel meines früheren Gehaltes. Mein Partner arbeitet nur noch halbtags, um mich zu pflegen. Alle Therapieversuche müssen bei <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> zudem selbst bezahlt werden. 1/

Christina KochUnpopular opinion, but I’ll keep saying it: <a href="https://mastodon.social/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#hEDS</a>, <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a>, and other connective tissue disorders (CTDs) are massively underdiagnosed in <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a>, especially severe cases, and they’re a critical part of the puzzle.This is really big. These results suggest systemic immune involvement in hEDS (hypermobile Ehlers-Danlos Syndrome). hEDS is not just a connective tissue disorder but also exhibits systemic immune dysregulation. <a href="https://mastodon.social/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#hEDS</a> <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a><a href="https://academic.oup.com/immunohorizons/article/9/10/vlaf044/8256436?fbclid=IwdGRleAM3tRBleHRuA2FlbQIxMQABHtfxgFzzEKAVQnrqJZw0M0J7nWyYjdBB8kMH1pUFK25MY6JzuR8eb_6dCXVR_aem_O9P28YZIjc8RZLtXDIoWPA&login=false" rel="nofollow noopener" translate="no" target="_blank">https://academic.oup.com/immunohorizons/article/9/10/vlaf044/8256436?fbclid=IwdGRleAM3tRBleHRuA2FlbQIxMQABHtfxgFzzEKAVQnrqJZw0M0J7nWyYjdBB8kMH1pUFK25MY6JzuR8eb_6dCXVR_aem_O9P28YZIjc8RZLtXDIoWPA&login=false</a> 1/

Christina KochDank an <a href="https://ruhr.social/@sonjalemke" class="u-url mention" rel="nofollow noopener" target="_blank">@sonjalemke</a> , die mir auch hier im Fediverse folgt, für ihre Rede am 17.09.25 im Bundestag zu <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a>. „…Und wenn es Ihnen hilft, schreiben Sie es in Ihre High-tech Agenda. Wir wollen, dass Deutschland das erste Land ist, in dem ein Mensch von ME/CFS geheilt wird.“

BMFTREndlich da: Der <a href="https://social.bund.de/tags/Haushalt" class="mention hashtag" rel="nofollow noopener" target="_blank">#Haushalt</a> für das laufende Jahr 2025 wurde wegen des vorgezogenen Regierungswechsels erst in diesem Jahr verabschiedet. Enthalten sind viele Posten, die 🇩🇪 zukunftsfähig machen! Alle Facts hier: bmftr.bund.de/haushalt-25 <a href="https://social.bund.de/tags/Zukunftsministerium" class="mention hashtag" rel="nofollow noopener" target="_blank">#Zukunftsministerium</a> <a href="https://social.bund.de/tags/BMFuTuRe" class="mention hashtag" rel="nofollow noopener" target="_blank">#BMFuTuRe</a> <a href="https://social.bund.de/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a>

Christina KochFußballfreunde aufgepasst! Noch könnt ihr das <a href="https://mastodon.social/tags/EmptyStands" class="mention hashtag" rel="nofollow noopener" target="_blank">#EmptyStands</a> Solishirt vorbestellen und dabei die <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> Forschung unterstützen. Der Soli-Shirt-Vorverkaufszeitraum läuft noch bis Sonntag. Wir haben momentan fast 400 vorbestellte T-Shirts, was jetzt schon über 5.000€ an Spenden für die <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> Research Foundation bedeutet. Macht gerne nochmal Werbung in eurem Umfeld, auf euren SM-Profilen etc., und teilt diesen Beitrag! <a href="https://apps.emptystands.me/distribution/" rel="nofollow noopener" translate="no" target="_blank">https://apps.emptystands.me/distribution/</a>

Tom KindlonReview of a fictional book where a character has ME.From the spring 2022 Action for ME members' newsletter (which I've only just read)<a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

JB 🐎 :neuro:UK folx:I’m looking to get a rollator. My vague plan is to try to get to a mobility aid showroom to try a few things. But rollator seems the best fit for what I need right now, potentially one that converts to a transit wheelchair, but these are extra pricey!!My GP suggested reaching out to Red Cross for help with mobility aids. But seems like they only rent wheelchairs, which is not what I’m looking for right now. (But maybe they can do more?)Besides trying some mobility aids before buying, I’m tempted to buy second hand (e.g. off Gumtree, I’m not on Facebook). I know to check brakes / wheels etc. if second hand. But will be loads cheaper. Anything else to consider? (It is for ME/CFS and POTS.)Thank you in advance! <a href="https://beige.party/tags/pwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#pwME</a> <a href="https://beige.party/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://beige.party/tags/PosturalOrthostaticTachycardiaSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PosturalOrthostaticTachycardiaSyndrome</a>

Anti. 🐘"The country’s pension insurance system pushes people to go through rehabilitation (“Reha”) clinics before they can access disability supports. [...] By forcing affected people into inappropriate, unsafe rehab and worsening their conditions, instead of alleviating the economic burden, advocates and people with the disease say the German system is paradoxically making this crisis worse."<a href="https://thesicktimes.org/2025/09/16/germanys-reha-clinics-arent-set-up-for-long-covid-and-patients-are-reporting-harm/" rel="nofollow noopener" translate="no" target="_blank">https://thesicktimes.org/2025/09/16/germanys-reha-clinics-arent-set-up-for-long-covid-and-patients-are-reporting-harm/</a><a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://chaos.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCOVID</a> <a href="https://chaos.social/tags/Germany" class="mention hashtag" rel="nofollow noopener" target="_blank">#Germany</a>

JB 🐎 :neuro:Via Bateman Horne Center on BlueSky:A major multi-site study shows 97% of people with ME/CFS have autonomic symptoms, from dizziness to GI issues. These are strongly linked to illness severity.Better recognition through tools like COMPASS-31 & NASA Lean Test can improve care.Link to the study: <a href="https://www.mdpi.com/2077-0383/14/17/6269" rel="nofollow noopener" translate="no" target="_blank">https://www.mdpi.com/2077-0383/14/17/6269</a>10 different research centres contributed to this research including: CDC, Bateman Horne Center and Icahn School of Medicine at Mount Sinai.<a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://beige.party/tags/pwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#pwME</a> <a href="https://beige.party/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://beige.party/tags/PosturalOrthostaticTachycardiaSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PosturalOrthostaticTachycardiaSyndrome</a>

Mx. Luna CorbdenOn the upside, I'm not facing severe pain and brain fog today while trying to work. So my efforts to heal are working.Now I just have NORMAL problems, like being ADHD.There's a paradox in being an ADHD writer. There are certain tasks in writing which involve letting your mind wander... like revising the thematic elements in an opening chapter.The problem with this is when your mind wanders a bit too far afield.These are problems that I used to have before I got incredibly sick.So I'm trying to take that as a win, but it means clocking out a lot and burning my still-limited energy on not getting paid.On the upside for you... more shiteposts!!<a href="https://defcon.social/tags/AutDHD" class="mention hashtag" rel="nofollow noopener" target="_blank">#AutDHD</a> <a href="https://defcon.social/tags/WritersCoffeeClub" class="mention hashtag" rel="nofollow noopener" target="_blank">#WritersCoffeeClub</a> <a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a>

Irish ME/CFS AssociationThanks very much to the Solve ME/CFS Initiative who, as well as highlighting our recent donation to them on social media, also posted this message on their website <a href="https://solvecfs.org/irish-me-cfs-association-donates-over-10k-for-solve-research-initiatives/" rel="nofollow noopener" translate="no" target="_blank">https://solvecfs.org/irish-me-cfs-association-donates-over-10k-for-solve-research-initiatives/</a> and shared a message in an email bulletin<a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

AkiDieses Foto von der Ruhr habe ich am 3. Januar 2023 aufgenommen, kurz bevor ich das erste mal gecrashed bin. Damals hatte ich noch kein Wort dafür, dass plötzlich die Beine nachgeben, sich alles dreht und eine Flut aus reinem Schmerz durch den Körper strömt.Ich hatte die Infektion seit 3 Tagen hinter mir und dachte Bewegung an der frischen Luft ist ne gute Idee.Damals bin ich ca. 3 km gegangen, bis zum Crash. Heute sind es 300m - oder auch weniger.<a href="https://chaos.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://chaos.social/tags/pais" class="mention hashtag" rel="nofollow noopener" target="_blank">#pais</a> <a href="https://chaos.social/tags/PostCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovid</a>

Tom KindlonCrowdfunding for Daratumumab clinical study<a href="https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fond/" rel="nofollow noopener" translate="no" target="_blank">https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fond/</a>Image is screenshot from latest Science for ME weekly update<a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Anti. 🐘"What people with ME+ have to endure actually goes well beyond being ignored and psychologized. “Othering” is a process whereby they are excluded from the community, from the “us”, into some kind of “otherness”. They will not just be ignored, but stigmatized and all too often even hated because they are the signs of our failure. Their mere existence is seen as an insult to the community."<a href="https://ottokolbl.medium.com/how-face-masks-instead-of-saving-us-became-a-sign-of-failure-stigma-and-division-b10cfd24d3dd" rel="nofollow noopener" translate="no" target="_blank">https://ottokolbl.medium.com/how-face-masks-instead-of-saving-us-became-a-sign-of-failure-stigma-and-division-b10cfd24d3dd</a><a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://chaos.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCOVID</a> <a href="https://chaos.social/tags/masks" class="mention hashtag" rel="nofollow noopener" target="_blank">#masks</a> <a href="https://chaos.social/tags/pandemic" class="mention hashtag" rel="nofollow noopener" target="_blank">#pandemic</a>

🩺 𝐈𝕟𝓽乇Ň𝕊𝓲Ⓥ∂ⓘ𝐯𝓪 :verify:<a href="https://mastodon.de/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://mastodon.de/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://mastodon.de/tags/pem" class="mention hashtag" rel="nofollow noopener" target="_blank">#pem</a> <a href="https://www.millionsmissing.de/2025-09-14-belastung-loest-bei-me-cfs-immunantwort-wie-auf-krankheitserreger-aus/" rel="nofollow noopener" translate="no" target="_blank">https://www.millionsmissing.de/2025-09-14-belastung-loest-bei-me-cfs-immunantwort-wie-auf-krankheitserreger-aus/</a>

Christina KochLiebes Fediverse, schaffen wir es GEMEINSAM, diese Kunstausstellung zu <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> im Landtag <a href="https://mastodon.social/tags/NRW" class="mention hashtag" rel="nofollow noopener" target="_blank">#NRW</a> möglich zu machen? Es braucht dafür noch ca. 4000 Euro an Spendengeldern. "Leiden und sterben lassen in Deutschland"Helft uns, dieses wichtige Projekt zu realisieren und direkt in die Herzen der Politiker*innen zu treffen. Bitte teilen und spenden (wenn möglich!). Mehr Infos zur Ausstellung und zu <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> im Gofundme. <a href="https://www.gofundme.com/f/leiden-und-sterben-lassen-in-deutschland?attribution_id=sl:1a45fc79-5eeb-45c8-832b-dbc9abf69335&lang=de_DE&utm_campaign=man_ss_icons&utm_medium=customer&utm_source=copy_link" rel="nofollow noopener" translate="no" target="_blank">https://www.gofundme.com/f/leiden-und-sterben-lassen-in-deutschland?attribution_id=sl:1a45fc79-5eeb-45c8-832b-dbc9abf69335&lang=de_DE&utm_campaign=man_ss_icons&utm_medium=customer&utm_source=copy_link</a>

Tom KindlonFrom ME Research UK:“Individuals with ME/CFS, particularly those with long COVID, are especially prone to memory and concentration difficulties” finds a study looking at data from the the National Health Interview Survey (NHIS) in the US. Read more: <a href="https://bit.ly/428u7eL" rel="nofollow noopener" translate="no" target="_blank">https://bit.ly/428u7eL</a><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://disabled.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#longcovid</a> <a href="https://fedigroups.social/@longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Tom Kindlon3/ New working link for: Hormonal Fluctuations and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Women: The Role of Menstrual Cycle and MenopauseFree fulltext: <a href="https://medscireview.net/index.php/Journal/article/view/2032" rel="nofollow noopener" translate="no" target="_blank">https://medscireview.net/index.php/Journal/article/view/2032</a><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Christina KochLet's talk about face masks. 🧵In many epidemics and in the COVID-19 pandemic, healthcare workers (HCW) have died or suffered long-term illness. Governments were criticized for not providing PPE. Now the backlash: The University of Oxford, the Centre for Evidence-Based Medicine (Oxford), Chochrane, and others claim that N95/FFP2 masks are useless.<a href="https://mastodon.social/tags/covid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#covid19</a> <a href="https://mastodon.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#longcovid</a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://mastodon.social/tags/facemasks" class="mention hashtag" rel="nofollow noopener" target="_blank">#facemasks</a> <a href="https://mastodon.social/tags/maskup" class="mention hashtag" rel="nofollow noopener" target="_blank">#maskup</a> <a href="https://mastodon.social/tags/yallmasking" class="mention hashtag" rel="nofollow noopener" target="_blank">#yallmasking</a>1/

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