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Co-Founder of U2Fight_World /Long Hauler since 2020
Europe
Joined July 2022
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Long COVID trial design could be improved by incorporating outcomes that address important symptom clusters such as PEM, dysautonomia, MCAS. Clinical assessments, physical tests & biomarkers can supplement PROM measure data.
frontiersin.org/journals/pubā¦
Lastly, safety of the intervention is rarely adequately evaluated. We recommend a concerted effort to include patient input at all steps of clinical trial design, execution and evaluation.
@MatthiasHauer @BMG_Bund @bmftr_bund
PostX #UniteToFight2024 retweeted
Viral InfectionāInduced Epilepsy & Gut Microbiome Crosstalk:viral infections linked to seizures-gut microbial changes. Zika virus (ZIKV), West Nile virus (WNV), herpes simplex virus-1 (HSV-1), in human epileptogenesis, direct microbiomeāseizure connections wires.onlinelibrary.wiley.coā¦
PostX #UniteToFight2024 retweeted
Viral traces still in the lungs 84 days later, despite no detectable live virus.
Johns Hopkins researchers found persistent brain inflammation and memory loss in female mice after COVID, driven by increased TLR7 signaling.
Blocking TLR7 prevented these effects, revealing a potential Long COVID treatment target.
biorxiv.org/content/10.1101/ā¦
PostX #UniteToFight2024 retweeted
Ganz wichtiger Artikel von @dysclinic & Co.
hEDS, MCAS, POTS/Dysautonomie kƶnnen bei zB Operationen zu unvorhergesehenen Komplikationen fĆ¼hren.
Deswegen bekommen Betroffene bei mir entsprechende OP-Informationen ausgehƤndigt.
tandfonline.com/doi/full/10.ā¦
PostX #UniteToFight2024 retweeted
š“ TRENDET MIT! š„
Alle Infos findet ihr in den Bildern!
š¬ Die ersten Reels sind schon da! Schaut sie euch an und macht mit!
š¢ Jetzt auf allen Plattformen!
ā¤ļø #HeyChatGPTMECFS
instagram.com/s/aGlnaGxpZ2h0ā¦
PostX #UniteToFight2024 retweeted
š Seronegative Sjƶgrenās deserves the spotlight.
Thank you, @lupuscyclopedia, for highlighting this important conversation ahead of #ACR26!
Weāre also planning a study on seronegative Sjƶgrenās at KGMUāturning clinical questions into research.
As an #ACRAmbassador, I look forward to learning, connecting & sharing insights from ACR Convergence 2026. Join the conversation!
#Sjogrens #RheumTwitter
Come to @ACRheum #ACR26 Orlando Convergence to hear more about seronegative #Sjogrens in the huge Sjogrens sessions!
rheumatology.org/annual-meetā¦
#ACRambassador
PostX #UniteToFight2024 retweeted
Tissue-resident macrophages sense colonic stiffening via Piezo1, releasing NGF to sensitize TRPV1+ nociceptors for visceral pain @SciImmunology
science.org/doi/10.1126/sciiā¦ šØš³
PostX #UniteToFight2024 retweeted
ME oder Psyche
Die richtige Diagnose ME/CFS sei med. geboten, sozialrechtlich aber kein SelbstlƤufer. Die Bewertungssysteme bildeten psych. Stƶrungen deutlich leichter ab als ME/CFS, das nur analog und nur mit sichtbar gemachter PEM bewertet werden kƶnne.
anwalt.de/rechtstipps/me-cfsā¦
PostX #UniteToFight2024 retweeted
YOUR ATTENTION:
šØEvery new COVID-19 (re)infection elevates your cardiovascular risk profile. Even mild cases can raise the odds of a heart attack, stroke, heart failure, and other CV events for months to years afterward. Risk is higher with more severe illness, yes, but itās certainly not limited to severe disease. Updated vaccination will show some mitigation(infection severityā) but doesnāt give you a risk-free pass!
#AvoidSars2 #AvoidReinfections #UpdateVaccination
ā”ļøSupportive links:
1. Xie et al., Nature Medicine (2022): Long-term cardiovascular outcomes of COVID-19 (elevated risk even in non-hospitalized patients, graded by severity).
nature.com/articles/s41591-0ā¦
2. American Heart Association news release (2024) on the UK Biobank analysis (ā2Ć risk of heart attack/stroke/death for up to 3 years after any COVID-19 infection).
newsroom.heart.org/news/coviā¦
3. Lindgren et al., Journal of Internal Medicine (2026): Nationwide Swedish matched cohort (nearly doubled long-term MACE and death risk in hospitalized cases, persisting beyond year 1).
onlinelibrary.wiley.com/doi/ā¦
4. Hadidchi et al., Journal of Human Hypertension (2026): Elevated CV outcomes (including in non-hospitalized patients) among those with pre-existing hypertension.
nature.com/articles/s41371-0ā¦
5. CARTESIAN study, European Heart Journal (2025): Accelerated vascular aging / arterial stiffness after COVID-19, including mild cases:
academic.oup.com/eurheartj/aā¦
ā”ļøThese five links give a clear progression from the early 2022 data through 2024ā2026 confirmation!!
PostX #UniteToFight2024 retweeted
Neue Termine, jeweils 18ā20 Uhr via Zoom:
ā¢ 24.02.2027: ME/CFS ā Umgang mit psychiatrischen Fehldiagnosen
ā¢ 17.03.2027: ME/CFS ā Sozialversicherungen und Leistungen
ā¢ 12.05.2027: ME/CFS ā Besonderheiten in der Psychopharmakotherapie
Danke fĆ¼r Ihr VerstƤndnis.
PostX #UniteToFight2024 retweeted
Anne lebt mit ME/CFS in einem dunklen Raum, komplett isoliert. Sie kann nicht allein essen, nicht zur Toilette ā wie hƤlt man das aus? trib.al/QiUFK28
PostX #UniteToFight2024 retweeted
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isnāt anything we didnāt already know. There are also fundamental inaccuracies within it.
Please also bear with me; Iāve had an extremely large amount of messages and Iām operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
PostX #UniteToFight2024 retweeted
University of WĆ¼rzburg researchers studied 323 Long COVID patients and found low-dose prednisolone modestly improved fatigue, but benefits faded after treatment.
B vitamins showed no benefit.
thelancet.com/journals/eclinā¦
PostX #UniteToFight2024 retweeted
Evidence grows for ācircadian depressionā
go.nature.com/4yHVJ7R
PostX #UniteToFight2024 retweeted
BCG vac mitigates tau pathology and restores cognitive function; BCG ā¬ļø hippocampal phospho-tau & microgliosis while preserving neuronal markers. (MRI)- attenuation of brain atrophy withā¬ļø glutamate-weight chemical exchange saturation transferāMRI signals. science.org/doi/10.1126/sciaā¦
PostX #UniteToFight2024 retweeted
High cholesterol has been linked to worse COVID outcomes since 2020, but nobody could say why. A study from Gladstone/UCSF now shows LDL cholesterol feeding viral replication directly, and identifies the viral protein that pulls more of it into the cell.š§µ
SARS-CoV-2 can directly link its replication to host cholesterol levels via ORF3a
link.springer.com/article/10ā¦
Individuals with post-COVID HZ had significantly higher risks of developing hematologic and infectious complications.
pmc.ncbi.nlm.nih.gov/articleā¦
āThese findings show that bone marrow is an important reservoir of VZV-reactive memory T cells and may play a key role in long-term immune protection against viral reactivation,ā said Andreas Radbruch of the Deutsches Rheuma-Forschungszentrum Berlinā.
eurekalert.org/news-releasesā¦
