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postx.bsky.social
PostX
@postx.bsky.social
600 followers 390 following 150 posts
Co-Founder Unitetofight2024, Pharmacist, Long Hauler since 2020
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postx.bsky.social
PostX @postx.bsky.social · Dec 29
Documentary “Hirschhausen & the Long Shadow of the Pandemic” now on YouTube with English subtitles. Footage from the #UniteToFight2024 conference @unitetofight.bsky.social @virusesimmunity.bsky.social & International ME/CFS Day @scheibenbogen.bsky.social

t.co/XvNHvrnsPp
Reposted by PostX
bettinagrande.bsky.social
Betroffene, die keine PEM riskieren wollen, oder instinktiv vorsichtig sind,
gelten nun wieder als „Vermeider“,
als „ängstlich“-
oder einfach als
„nicht kooperativ“.

Das Willens-und Charakter-Narrativ ist somit zurück.

Fazit:
Wer nicht belastbar ist,
wird pathologisiert,
nicht geschützt.
November 2, 2025 at 8:52 AM
Reposted by PostX
bettinagrande.bsky.social
PEM, das zentrale Merkmal von MECFS, ist kein neuer Begriff.
PEM wird aber zunehmend verfälscht, von #MECFS entkoppelt und bestenfalls als postvirale Belastungsintoleranz verharmlost.
Damit wird das zentrale Krankheitsmerkmal von #MECFS verwässert und umetikettiert, Reha und #GET werden möglich.
November 2, 2025 at 8:52 AM
Reposted by PostX
thelancet.com
Large-vessel vasculitis is defined as diseases that cause inflammation in large blood vessels.

A Seminar provides a comprehensive review, with a focus on recent advances, therapeutic approaches, and areas for further research.

Read now: tinyurl.com/ynsfkev5
Large-vessel vasculitis
Primary large-vessel vasculitis encompasses conditions that, despite sharing many common features, constitute distinct entities that have their own prognostic implications. These conditions include gi...
tinyurl.com
October 29, 2025 at 10:18 AM
Reposted by PostX
martinruecker.bsky.social
„Ich finde das inakzeptabel und in Anbetracht der großen Betroffenheit in unserer Gesellschaft völlig unzureichend.“ Sagte Friedrich #Merz 2023, als Forschungsministerin Stark-Watzinger nur 41 Mio € für #LongCovid #MECFS Forschung budgetierte. www.aerzteblatt.de/news/merz-ve...
Merz verlangt mehr Förderung zum Erforschen von Long COVID – Deutsches Ärzteblatt
www.aerzteblatt.de
October 29, 2025 at 10:03 AM
Reposted by PostX
riffreporter.bsky.social
#Bayern investiert in eine Studie zur Kneipp-Hydrotherapie bei #PostCovid-Patientïnnen. Kritikerïnnen bemängeln die kleine Teilnehmerïnnenzahl, unklare Methoden & mögliche Risiken für Betroffene. @martinruecker.bsky.social erklärt, was hinter der Kontroverse steckt:
Bayerns umstrittene Kneipp-Studien für Long-Covid-Patienten
Der Freistaat Bayern fördert Kneipp-Therapien gegen Post-Covid mit fast 500.000 Euro. Eine Recherche über die Hintergründe und die Kritik an den Studien.
www.riffreporter.de
September 27, 2025 at 5:02 PM
Reposted by PostX
keithmuise.bsky.social
@postx.bsky.social
keithmuise.bsky.social Keith Muise @keithmuise.bsky.social · Sep 12
Getting Wild for Covid Awareness.

Want to help me stay in the advocacy game? $5 goes a long way.

I want helping people, and educating others to be more than a dream. That’s my goal.

gofund.me/f1f07602

#health #sick #kids #teacher #backtoschool #mentalhealth I
September 13, 2025 at 9:07 PM
Reposted by PostX
bmhughes.bsky.social
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group

The process so far has been extremely progressive

I am hugely optimistic that a world-leading guideline will be produced

#pwME #MECFS
Myalgic Encephalomyelitis (ME) - HSE.ie
www.hse.ie
September 9, 2025 at 2:46 PM
postx.bsky.social
Warum liegen die Neurologen (#DGN), die doch durchaus die Expertise für eine solche oft mit neurologischen Symptomen einhergehende Erkrankung haben sollten, falsch?

Die DGN hat sich bislang kaum mit ME/CFS beschäftigt.

Interview mit Prof. Scheibenbogen
www.tagesspiegel.de/gesundheit/i...
Ist ME/CFS eine Krankheit – oder viele?: „Es gibt eine Reihe von vielversprechenden Medikamenten“
Zu viele Symptome, zu viele Ursachen: Die Gesellschaft der Neurologen bezweifelt, dass das chronische Fatigue-Syndrom eine eigenständige Erkrankung ist. Charité-Professorin Carmen Scheibenbogen widers...
www.tagesspiegel.de
September 11, 2025 at 9:12 AM
Reposted by PostX
buechnerronja.bsky.social
Nicht nur wegen der Klicks (höhö), sondern auch wegen der Gespräche bei der Krit. Psych., den internationalen Kontaktaufnahmen bzgl der Studie, dem Bericht im Ärzteblatt ...

Es sickert langsam ein und #LC, #ME/CFS, #PCVS et al. lassen sich nicht länger ignorieren und immer weniger psychologisieren.
September 10, 2025 at 8:47 AM
Reposted by PostX
exceedhergrasp1.bsky.social
Braden Yellman from Bateman-Horne is now talking about comorbidities of #MECFS. 🧪

Starting with hEDS (hypermobility, hypermobile Ehlers-Danlos)
hEDS (Q79.62) Self-reported data in a cross-sectional study of those with ME/CFS suggests that 15.5% of those with ME/CFS have joint hypermobility and 28% of those with ME/CFS + Long COVID report it In a self-reporting prospective observational study those with generalized hypermobility were ~30% more likely to experience chronic symptoms after recovery from acute infection by SARS-CoV-2 with many meeting ME/CFS criteria
September 5, 2025 at 6:05 PM
postx.bsky.social
This study provided evidence of cerebrovascular dysregulation with reduced orthostatic cerebral blood flow velocity associated with symptoms of cerebral hypoperfusion, frequent small fiber neuropathy, and a widespread but mild autonomic failure in hEDS.

www.sciencedirect.com/science/arti...
Hypermobile Ehlers-Danlos Syndrome: Cerebrovascular, Autonomic and Neuropathic Features
Hypermobile Ehlers-Danlos syndrome (hEDS) affects multiple systems, but comprehensive evaluations of a larger sample of hEDS patients are lacking. The…
www.sciencedirect.com
August 26, 2025 at 8:24 PM
Reposted by PostX
aai.org
Data from Dr. Akiko Iwasaki @VirusesImmunity.bsky.social, Dr. Victoria C. Bastos, and Kerrie Greene found 2 distinct immunotypes of ME/CFS. This work suggests distinct drivers of disease helping to differentiate the pathophysiology of #MECFS. Read it in AAI News: ow.ly/7c1750VXiiR.
May 28, 2025 at 1:13 PM
Reposted by PostX
geschom.bsky.social
www.aerzteblatt.de/news/viele-m...

Das Ärzteblatt berichtet über unsere Studie zur Stigmatisierung und Psychologisierung bei LC und PostVac - das ist gut! Nochmal Glückwunsch @buechnerronja.bsky.social !!
Viele Menschen mit Long COVID erleben Stigmatisierung und Psychologisierung – Deutsches Ärzteblatt
www.aerzteblatt.de
August 22, 2025 at 1:45 PM
Reposted by PostX
erictopol.bsky.social
Body fat distribution predicts the pace of cardiovascular system aging, with sex-specific patterns, and protective effect of estrogen
academic.oup.com/eurheartj/ad...
Sex-specific body fat distribution predicts cardiovascular ageing
AbstractBackground and Aims. Cardiovascular ageing is a progressive loss of physiological reserve, modified by environmental and genetic risk factors, that
academic.oup.com
August 22, 2025 at 5:45 PM
Reposted by PostX
langzeitc.bsky.social
Die Charité und das #MECFS und #PostCovid Team um Prof. @scheibenbogen.bsky.social haben einen Praxisleitfaden für ME/CFS veröffentlicht.
Bitte um Retweet in der Medi-Bubble 🙏
www.mecfs.de/praxisleitfa...
Praxisleitfaden ME/CFS — Deutsche Gesellschaft für ME/CFS
Neuer Praxisleitfaden zu Diagnose und Behandlung von ME/CFS von der Deutschen Gesellschaft für ME/CFS und dem Charité Fatigue Centrum
www.mecfs.de
August 22, 2025 at 5:51 PM
Reposted by PostX
buechnerronja.bsky.social
💥Unser Artikel zur #Stigmatisierung und #Psychologisierung von #LC und #PCVS ist heute Nacht bei BMC medicine erschienen @geschom.bsky.social @scheibenbogen.bsky.social & Christian Sander & Stephanie Schindler & Martin Walter

Anbei die wichtigsten Befunde in hoffentlich verständlicher Sprache🧵 1/6
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome - BMC Medicine
Background People reporting long COVID (LC) or post-COVID-19 vaccination syndrome (PCVS) not only suffer from their symptoms but also from stigmatization. Despite ample account and characterization of...
link.springer.com
August 20, 2025 at 7:22 AM
postx.bsky.social
Das Lied "Im Dunkel" hat Mark Kirch mit Hilfe von KI-Synthese erstellt.

Freitod, weil das Leben mit schwerster ME/CFS nicht aushaltbar ist.

www.youtube.com/watch?v=igGv...

www.moz.de/lokales/bern...
Freitod in Bernau: Leben in Dunkelheit und Stille – warum Marc Kirch seinen Suizid plant
Der 51-jährige Marc Kirch aus Bernau ist schwerst an ME/CFS erkrankt und plant seinen begleiteten Freitod. Sein Fall wirft Fragen über den Umgang mit Erkrankten und die Anerkennung ihrer Leiden auf.
www.moz.de
August 20, 2025 at 10:15 AM
postx.bsky.social
People reporting LC or PCVS are subject to stigmatization & psychologization. From a patient perspective, psychologization appears to be an important driver of stigmatization & negative outcomes.
Thank you
@geschom.bsky.social @scheibenbogen.bsky.social @buechnerronja.bsky.social
August 20, 2025 at 8:04 AM
postx.bsky.social
I received one of the livestream passes to the Symposium „LC & other PAIS“ @keystonesymposia.bsky.social
thanks to @meighanstone.bsky.social @lccampaign.bsky.social
Shared my takeaways & importance of inclusion with @betsyladyzhets.bsky.social @thesicktimes.org

thesicktimes.org/2025/08/19/t...
“The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration - The Sick Times
Last week, leading Long COVID and infection-association chronic condition (IACC) researchers met in Santa Fe, New Mexico, for the field’s second Keystone Symposia meeting. They were joined by advocate...
thesicktimes.org
August 20, 2025 at 6:50 AM
postx.bsky.social
Long COVID was associated with work limitations, cognitive dysfunction, and sickness absenteeism among employed US adults. Workplace accommodations may be important considerations for people with long COVID.

onlinelibrary.wiley.com/doi/10.1002/...
Employment Status, Work Limitations, Cognitive Dysfunction, and Sickness Absenteeism Among US Adults With and Without Long COVID
Introduction Long COVID may limit people's ability to carry out daily activities, including work. Little is known about the potential effect of long COVID on work limitations and absenteeism. We des...
onlinelibrary.wiley.com
August 19, 2025 at 5:58 PM
postx.bsky.social
Prospective cohort study INSPIRE: when replicating LC definitions used in 5 published studies with the largest sample size of reviewed studies, prevalence of LC among participants who were COVID-19+ varied at 3 months from 32% to 42% & at 6 months from 15% to 22%.
jamanetwork.com/journals/jam...
Variability in Long COVID Definitions and Validation of Published Prevalence Rates
This cohort study uses varying definitions of long COVID from 5 published studies to estimate its prevalence in participants in the Innovative Support for Patients With SARS-CoV-2 Infections Registry.
jamanetwork.com
August 19, 2025 at 5:53 PM
postx.bsky.social
Participants with long COVID most commonly reported brain fog, altered sense of smell and taste, shortness of breath, fatigue, memory problems, and difficulty speaking. Participants with PVS more frequently reported burning sensations, neuropathy, and numbness. www.medrxiv.org/content/10.1...
Comparative Analysis of Long COVID and Post-Vaccination Syndrome: A Cross-Sectional Study of Clinical Symptoms and Machine Learning-Based Differentiation
Importance. Long COVID is a well documented post viral syndrome, while post vaccination syndrome (PVS) remains poorly characterized. Understanding their similarities and differences is essential for r...
www.medrxiv.org
August 18, 2025 at 8:52 PM
Reposted by PostX
bhanlon15.bsky.social
RNZ: 'Decoding ME/CFS'

New research has found ME/CFS is partly caused by genetics, related to the immune and nervous system

'Professor Chris Ponting from University of Edinburgh is an investigator on the DecodeME study. He joins..to explain what needs to be done..'

www.rnz.co.nz/national/pro...
Decoding ME/CFS
New research has found ME/CFS is partly caused by genetics, related to the immune and nervous system.
www.rnz.co.nz
August 16, 2025 at 2:33 PM
postx.bsky.social
We found that COVID-19 reinfection resulted in a roughly 35% increase in the incidence of long COVID in a matched cohort using observational electronic health records.

www.medrxiv.org/content/10.1...
August 17, 2025 at 7:06 PM
postx.bsky.social
These findings suggest that HZ reactivation after COVID-19 signals a vulnerable subgroup predisposed to cardiorenal complications

www.nature.com/articles/s41...
Cardiorenal outcomes after herpes zoster reactivation in COVID-19 survivors from a global TriNetX study - Scientific Reports
Scientific Reports - Cardiorenal outcomes after herpes zoster reactivation in COVID-19 survivors from a global TriNetX study
www.nature.com
August 17, 2025 at 9:35 AM