Prof. dr. Vivienne Matthies-Boon
@vmatthiesboon.bsky.social
Socrates Professor focused on Medical Ethics and Postinfectious Illnesses (incl. Long Covid). Radboud University, Netherlands
Oh and to be sure, IIH treatment will NOT solve everything (is symptomatic treatment after all). And also not for everyone! But given that mostly the causal mechanisms IIH are not known either, and many MECFS patients have cerebral flow issues, would make sense to unite expertise together better.
Our daughter went from being entirely housebound and mostly bedridden to being 80-90% functional within 3 weeks of starting Acetazolamid for her IIH. #LongCovid and #MECFS must be psychosomatic! 🤪
Coming soon... "Wie Betroffenheit (nicht) anerkannt wird: Zur Struktur medizinischer Gewalt bei #MECFS und #LongCOVID" @privilegienschreck.bsky.social @buechnerronja.bsky.social @geschom.bsky.social @vmatthiesboon.bsky.social @sonjahannibal.bsky.social
The letter is still open to sign at: protecthumanbiosystems.world And Follow @laboflivedexp.bsky.social to learn more about the community-owned innovation system we are also building to centre our expertise across all of it
#Protecthumanbiosystems
An international campaign to protect humans like we protect the environment.
protecthumanbiosystems.world
During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems and stories by people with Severe or Very Severe ME to raise awareness. Submit yours here: https://meassociation.org.uk/.../campaigns/severe-me-week/ #SevereME #MECFS #SevereMEWeek
Working in academia with a chronic illness and after a period of living death really changes perspective more than in 1 way. One change that recently became clear to me is the annihiliation of FOMO - a common issue amongst academics still. 1/10 #academia #chronicillness #LongCovid #MCAS
Now someone please explain to me why #MCAS is taking such a backseat in nearly all #MECFS #LongCovid and #PAIS research/ conferences? It just does not make any sense. (MCAS): Dr. Lawrence Afrin Reveals Genetic Causes, Symptoms & Comorbidities braininflammation.org/mast-cell-ac...
Mast Cell Activation Syndrome (MCAS): Dr. Lawrence Afrin Reveals Genetic Causes, Symptoms & Comorbidities - braininflammation
Uncover the secrets of Mast Cell Activation Syndrome (MCAS) in this exclusive 2025 interview with Dr. Lawrence Afrin. Explore mast cell biology, somatic mutations, links to POTS & EDS, and emerging tr...
braininflammation.org
Children w #MECFS suffer an impossible plight - from medical gaslighting to being falsely accused of child protection issues. This has to stop. Very grateful for the amazing work done by @privilegienschreck.bsky.social, @ffhambu.bsky.social and @buechnerronja.bsky.social, and to be part of the below
Fabian Fritz@ffhambu.bsky.social · last mo.Der Verband Kinder- und Jugendarbeit Hamburg (VKJH) hatte @buechnerronja.bsky.social @privilegienschreck.bsky.social @vmatthiesboon.bsky.social mich und andere gefragt, ob wir etwas zu Kindern und Jugendlichen mit #LongCOVID und #MECFS und deren Versorgung schreiben. Danke nochmals für das Angebot.
📢 ✨ I am extreeeemely excited to be part of this summerschool with Christine Happle and Petra Verdonk amongst others. ✨ 1/4 #MECFS #LongCovid #Gender #PAIS #callforapplications
Het hoge woord is eruit. Wat ons al heel lang dwars zit, en ons leven bovenop de ziekte een hel maakt, staat nu eindelijk in de krant. Met zeer grote dank aan de journalist Eric Reijnen Rutten van DeGelderlander #LongCovid #LongCovidkids #Maskdiscrimination www.gelderlander.nl/binnenland/v...
Vivienne (47) en Jenna (10) worden bespuugd om hun mondkapje, maar zonder wordt het levensgevaarlijk: ‘Reacties soms zó agressief’
Voor Vivienne (47) en haar 10-jarige dochter Jenna bepaalt het coronavirus nog elke dag hun leven. Terwijl Jenna ernstig ziek thuis ligt, krijgt Vivienne op straat verwijten, hoestbuien in haar gezich...
gelderlander.nl
Die Behauptung, die Versorgung von Kindern mit #LongCovid und #MECFS in NRW sei durch die PEDNET-Zentren angesichert, ist ebenso lächerlich wie traurig. Kein Wort über den Schaden, den die Psychologisierung anrichtet … rp-online.de/nrw/staedte/...
Kinderklinik am Marien-Hospital in Wesel: Weggang von Chefärztin – Was das für Patienten mit Long Covid bedeutet
Rund sieben Jahre lang war Cordula Koerner-Rettberg Chefärztin der Kinderklinik am Marien-Hospital in Wesel – und eine wichtige Ansprechpartnerin für Kinder und Jugendliche mit Long Covid. Doch nun is...
rp-online.de
Waiting for the dentist and their assistants to have understood they need to wear an FFP2 around me ... Sigh... #MCAS #LongCovid #LongCovidkids
This is what dealing with a deadly virus looks like in Congo. Horrific! And IF people survive the virus, 50-85% develop Post Ebola Syndrome. This is hardly rapported on. We must look at acute infections AND post acute infectious syndromes together in public health. #PAIS #Postebolasyndrome #ebola
The New York Times@nytimes.com · 2mo agoAt the epicenter of the Ebola outbreak in the Democratic Republic of Congo, the front line is completely overwhelmed. Our chief Africa correspondent, Declan Walsh, describes what he saw in the Ebola ward at Mongbwalu General Hospital. www.nytimes.com/2026/05/30/w...
This is what dealing with a deadly virus looks like in Congo. Horrific! And IF people survive the virus, 50-85% develop Post Ebola Syndrome. This is hardly rapported on. We must look at acute infections AND post acute infectious syndromes together in public health. #PAIS #Postebolasyndrome #ebola
The New York Times@nytimes.com · 2mo agoAt the epicenter of the Ebola outbreak in the Democratic Republic of Congo, the front line is completely overwhelmed. Our chief Africa correspondent, Declan Walsh, describes what he saw in the Ebola ward at Mongbwalu General Hospital. www.nytimes.com/2026/05/30/w...
Falls ihr noch nicht in die aktuelle SodaKlub-Folge reingehört habt, ich denke, es lohnt sich: open.spotify.com/episode/5FCA...
Ich hab mit edition a ein Buch über ME/CFS gemacht. Hoffentlich ist es hilfreich vor allem für jene, wo die Diagnose noch unklar ist. Normale medizinische Versorgung kann es jedenfalls nicht ersetzen. Darum geht mein Anteil zu 100% an CS Nordlicht der Caritas Socialis.
Short reel (in Dutch) by Radboud Reflects as to why the question "do we need to be afraid of a new #pandemic" is the wrong question. The three points I make are: 👇 youtube.com/shorts/SaZq-... #ebola #hanta #infectiousdisease
Moeten we bang zijn voor een nieuwe pandemie? Verkeerde vraag volgens ethicus Vivienne Matthies-Boon
YouTube video by Radboud Reflects
youtube.com
Mijn opiniestuk in De Gelderlander vandaag, over #Ebola, #Hanta en de absolute noodzaak van een andere blik. #LongCovid, #PAIS www.gelderlander.nl/opinie/wie-k...
Wie kijkt verder dan de eigen gezondheid? We moeten grensoverschrijdend denken
Moeten we bang zijn voor een nieuwe pandemie? Die vraag wordt in de media gesteld maar het is de verkeerde vraag, vindt Vivienne Matthies-Boon.
gelderlander.nl
Aanstaande dinsdag houd ik samen met Alma Tostmann een actualiteitencollege voor Radboud Reflects over "Een nieuwe pandemie?" - tussen 12.30 en 13.15 in het collegezalen complex. 1/5 www.ru.nl/diensten/spo... #Ebola #Hanta #PAIS #Ethics #MECFS
Een nieuwe pandemie? | Radboud Universiteit
Hoever zijn we verwijderd van een nieuwe pandemie? Hoe verhouden epidemieën zich tot politieke ontwikkelingen en klimaatverandering? CC5, 26 mei 2026
ru.nl
I agree with what @buonsenso.bsky.social writes on X. x.com/i/status/205... I see similar patterns elsewhere too, with a risk also that where pediatric #LongCovid care and research does become institutionalised it risks being psychosomatised. Psychosomatics is not only flawed but also cheap.
x.com
I cannot help but wonder how this would work out for us, #MCAS patients, where precisely the innate immune system is overreactive already!? "The new vaccine, for now known as GLA-3M-052-LS+OVA, mimics the T cell signals that directly stimulate innate immune cells med.stanford.edu/news/all-new...
One vaccine may provide broad protection against many respiratory infections and allergens
Stanford Medicine researchers and their colleagues invented a new vaccine that protects mice from respiratory viruses, bacteria and allergens — the closest yet to a universal vaccine.
med.stanford.edu
In reading Karl Jaspers (philosopher) his own description of his illness experiences - that accompanied his entire life - i really cannot help but wonder if he, in addition to his lung disease, also had #MECFS!?? 🤔
Hallo ihr Lieben, 💖 die #LiegendDemos haben dieses Jahr schon über 150 Berichterstattungen erreicht! 🚀 Wir haben den gesamten ÖRR (ARD, ZDF, fast alle dritten Programme, Radiosender), SZ, FAZ, DIE ZEIT, SPIEGEL, STERN, WELT, Influencer, uvm erreicht.
For #MECFSawarenessday, I wish more biomedical research, medical care but also small things like my daughter being able to at the family dinner table again. #children #MECFS
Endlich online! Open Access. Pünktlich zum ME/CFS Awareness Day unser Text gegen die Psychologisierung von Long COVID und ME/CFS 💐 Danke an @privilegienschreck.bsky.social @ffhambu.bsky.social @postx.bsky.social @buechnerronja.bsky.social www.thieme-connect.com/products/ejo...
Morgen erscheint die neue Dr. med. Mabuse und damit auch unser Artikel "Den Krisenmodus aufheben: Die Partizipation von ME/CFS-Betroffenen bietet Chancen zur Verbesserung von Versorgung und Forschung"
Mirja Nicolas@privilegienschreck.bsky.social · 4mo agoPassend zum ME/CFS-Awareness-Tag erscheint am 12.05. ein Artikel von meinem Kollegen Dr. Klaas Schüller und mir in der neuen Dr. med. Mabuse. Es geht um Partizipation in der Erforschung und Versorgung von ME/CFS. Freue mich sehr darauf und wenn ihr die Zeitung kauft! ✨ zeitschrift-mabuse.de
Wir mussten leider früher los, aber hier sind ein paar Bilder von der Liegenddemo in Essen. Es war richtog cool, @frauxausnrw.bsky.social zu treffen!! Sie hat auch das coolste T-Shirt für meine Tochter gemacht. @liegenddemoessen.bsky.social #mecfs #longcovid #mcas
Heute in #Essen! 📢 Kommt um 15-17 Uhr zum Messeplatz 1 (Grugapark) zur #LiegendDemo. Unterstützt Menschen mit ME/CFS, Long-Covid & Post-Vac, die selbst zu krank sind, um dort zu sein. 💙 Zeigen wir gemeinsam Gesicht für mehr Forschung & Pflege! 🤝 #MECFS #LongCovid #PostVac #LiegenDemo
