MECFS Stuttgart retweetledi
MECFS Stuttgart
9.5K posts
MECFS Stuttgart
@MECFS_Stuttgart
Informationen & Aufklärung über #MECFS und #LongCovid 🇬🇧🇩🇪
Stuttgart, Deutschland Katılım Eylül 2019
2.2K Takip Edilen2.5K Takipçiler
@Lisathefirst20 @TanjaRadfahrer Man möchte sie alle einzeln umarmen. So eine süßmausige Herzensaktion, allerliebsten Dank 😭😍😭
Deutsch
@Dr_B_Hohberger Herzlichen Dank für ein Leuchten in der Dunkelheit. ein solches Zeichen der Solidarität und Sichtbarkeit bedeutet uns Betroffenen sehr viel. ✨🌟✨
Deutsch
MECFS Stuttgart retweetledi
In dieser Woche wurde zum internationalen ME/CFS-Tag das Kunstwerk „Der silberne Wegweiser“ am Bettenhaus des Chirurgischen Zentrums des Uniklinikums Erlangen im Rahmen der Initiative „LightUpTheNight4ME“ blau beleuchtet.
Foto: Pressestelle des Uniklinikums Erlangen
Deutsch
MECFS Stuttgart retweetledi
【ME/CFS世界啓発デーin静岡】
ライトアップイベント2026
R8.5.12
沢山のご来場まことにありがとうございました
＃MECFS ＃筋痛性脳脊髄炎 ＃ME
＃慢性疲労症候群 ＃CFS ＃啓発
＃線維筋痛症 #化学物質過敏症
#コロナ後遺症 #ワクチン接種後症候群 ＃POTS #MEawarenessDay
#ShizuokaCity
日本語
🦋ご報告🦋
【ME/CFS世界啓発デーin静岡】
ライトアップイベント2026
5月12日無事完了いたしました
沢山のご来場ありがとうございました。ご協賛ご協力くださいました全てのご賛同者様に心より感謝申し上げます。
イベントの配信は下記リンクよりご覧いただけます。
#MECFS
youtu.be/u-QFhO6nzIk
YouTube
日本語
@darthfoo Thx and so sorry to hear that you are bed bound 💔. It’s good you write.
Do you know Signor Rossi? an old comic. He is ~alla ricerca della felicità~ 😌 I hope very much you‘ll find it. 🙏
English
@MECFS_Stuttgart @benh_mecfs September 2021 COVID, September 2022 ME diagnosis. 95% bed bound since February. It’s been a brutal stretch. Writing about it helps me make sense of it, at least. Sending good thoughts to you both.
English
#MEAwarenessDay
10 years 99.9% bedbound.
15 years since the illness began.
23 y/o to 38 y/o in the blink of an eye, but the extraordinary suffering has been felt in every second of those years.
And there are thousands like me, or worse.
#MECFS #ME #MEAwarenessDay
English
MECFS Stuttgart retweetledi
A new long COVID study found that standard autoimmune blood tests often looked normal. But when researchers tested patients blood directly against heart and blood vessel tissue, they found persistent immune reactivity - especially involving vascular tissue.🧵
Harry Spoelstra@HarrySpoelstra
Tissue-specific autoantibody signatures reveal immune alterations undetected by routine serology in long COVID 🚨83% of long COVID patients have rogue autoantibodies attacking their own heart, lungs & blood vessels, and every standard blood test misses it completely. VERY INTERESTING! ➡️In a UNIQUE Hungarian cohort of 114 long COVID patients versus 36 pre-pandemic controls, tissue-specific Western blotting detected autoantibodies in 83% of cases, with strong cardiovascular dominance, ➡️Vascular autoreactivity was markedly higher in long COVID (34% vs. 8%, p<0.05), cardiac (54%) and pulmonary (34%) signals trended elevated but did not reach significance( cohort size?), ➡️Autoantibodies were predominantly IgM-skewed, polyreactive (up to 8 bands per patient), and persisted longitudinally (mean 141 days), with new isotypes emerging over time, ➡️Standard ANA testing showed no group differences and zero clinical correlations, rendering it useless for detecting these alterations, ➡️Cardiac autoreactivity associated with hypertension and headache, overall autoreactivity correlated with anosmia/ageusia, female sex, CRP, BMI, creatinine, and troponin levels, ➡️The study used human cardiac, pulmonary, and vascular tissue homogenates. ➡️Findings were independent of routine serology and highlight an under-recognized immune component invisible to current diagnostics. ➡️“This persistent, IgM-skewed profile suggests ongoing immune dysregulation and may reflect a previously underrecognized component of the immunological response in long COVID, highlighting the need for targeted immunodiagnostic approaches beyond routine serology.” ‼️Why this is shocking: It proves that in 83% of long COVID patients, the immune system is actively producing autoantibodies that directly target their own heart, lung, and especially blood-vessel tissues, yet every standard blood test (ANA HEp-2) comes back normal. These rogue antibodies are polyreactive, IgM-dominant, persist for months, and keep evolving. They correlate with real symptoms (anosmia, hypertension, headache) and lab markers of damage (troponin, CRP). ‼️In other words: The majority of long COVID sufferers have smouldering, organ-specific autoimmunity that is completely invisible to routine diagnostics. Doctors are flying blind while patients’ tissues are quietly under autoimmune attack. 🤔As far as I know, this is the first direct evidence of hidden, cardiovascular-dominant tissue autoimmunity driving the chronic L0ngC0vid phase! #BookMark #AvoidSars2 #AvoidReinfections link.springer.com/article/10.100…
English
MECFS Stuttgart retweetledi
MECFS Stuttgart retweetledi
ME/CFS ist, als würden Menschen unter Trümmern liegen und rufen:
„Wir sind hier. Wir brauchen Hilfe.“
Und statt zu graben, diskutiert man darüber, ob sie vielleicht nur lauter rufen müssten. Ob sie sich zu sehr auf die Trümmer konzentrieren. Ob es wirklich so schlimm sein kann,
Deutsch
MECFS Stuttgart retweetledi
神戸市では、約２０か所のランドマークがME/CFS啓発のためにブルーライトアップをしてくれます。公式の投稿などがあれば、ぜひみなさん拡散してくださいよろしくお願いします。
#Kobecity
#LightUpTheNight4ME
#mecfsawarenessday
日本語
MECFS Stuttgart retweetledi
𝟏𝟐 𝐦𝐚𝐢 — 𝐉𝐨𝐮𝐫𝐧𝐞́𝐞 𝐦𝐨𝐧𝐝𝐢𝐚𝐥𝐞 𝐝𝐞 𝐥’𝐞𝐧𝐜𝐞́𝐩𝐡𝐚𝐥𝐨𝐦𝐲𝐞́𝐥𝐢𝐭𝐞 𝐦𝐲𝐚𝐥𝐠𝐢𝐪𝐮𝐞 (𝐄𝐌/𝐒𝐅𝐂). Merci @SIG_Geneve 💙
#LightUpTheNight4ME
Français
MECFS Stuttgart retweetledi
Ein großartiger Artikel von @geschom & Co, den leider diejenigen, die ihn lesen sollten, nicht lesen werden.
Sehr viele kluge Argumente, warum die gerne praktizierte Psychologisierung von ME/CFS den Betroffenen schadet.
thieme-connect.com/products/ejour…
Deutsch
Solidarity with those whose lives have been affected by #MyalgicEncephalomyelitis.
#WorldMEDay #MECFS
#StillHere #YmaOHyd
English
MECFS Stuttgart retweetledi
Stuttgarterin des Jahres
Wie eine Ärztin trotz schwerem #MECFS anderen Mut macht
(Paywall)
stuttgarter-zeitung.de/inhalt.stuttga…
Deutsch
MECFS Stuttgart retweetledi
