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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 22h

My daughter had this, it was eosinophilic esophagitis.... dunno if this helps? She needed treatment with coisteroids.

Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 23h

Next week I will be travelling to Graz for a really exciting workshop on the ethics of chronic illness. To that effect, I finally put my research programme on postinfection ethics in a one page overview. Interested? Just reach out! :-) www.viviennematthiesboon.com/post/postinf...

Diagram with the main thematic elements of postinfection ethics (planetary health, pediatric ethics and psychologisation) as well as the different fields of ethics it relates to

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 03/10/2026

Went to a pub in Wuppertal last night to see one of my best friends from the UK who had a gig there. I was nervous about masking in a new setting, a pub. But people were very welcoming and warm, which was such a relief... #masking #MCAS

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Reposted by Prof. dr. Vivienne Matthies-Boon

Ronja Büchner @buechnerronja.bsky.social · 22/09/2026

Die neue WIDERSPRÜCHE kam jetzt auch bei mir an - gedruckt fühlt sie sich an wie ein 25 Jahre altes Lehrbuch. Die geballte Weisheit von Nicolas et al. könnt ihr euch hier bestellen: www.widersprueche-zeitschrift.de/de/heftbeste...

Eine Hand hält ein aufgeklapptes Heft, zu lesen ist:

Mirja Lisa Nicolas & Ronja Büchner & Fabian Fritz & Sonja Hannibal & Vivienne Matthies-Boon & Georg Schomerus

Wie Betroffenheit (nicht) anerkannt wird: Zur Struktur medizinischer Gewalt bei ME/CFS und Long COVID

1. Einleitung
In der Hochphase der COVID-19-Pandemie hat sich die Soziale Arbeit intensiv mit den gesellschaftlichen Bedingungen und Auswirkungen von Infektionen und Infektionsschutz beschäftigt (bspw. DGfE 2020). Demgegenüber äußert sie sich bisher kaum zu körperlichen Folgen des anhaltenden Infektionsgesche-hens. Hierzu gehören postakute Infektionssyndrome wie Long COVID und die Myalgische Enzephalomyelitis/das Chronische Fatigue-Syndrom (ME/CFS).
Die Betroffenenzahlen dieser Krankheiten sind hoch und verdeutlichen Hand-lungsbedarf: In Deutschland gab es Ende 2025 rund 1,4 Millionen Menschen mit Long COVID und/oder ME/CFS (MERF 2026). Viele Erkrankte sind er-werbsunfähig, pflegebedürftig und leben aufgrund der Schwere ihrer Krankheit sozial isoliert; Versorgungsstrukturen fehlen. Die Betroffenen berichten, dass ihnen ihr Krankheitserleben systematisch abgesprochen wird und dass vor allem Ärzt*innen, aber auch Behörden, ihre Krankheit psychologisieren (Büchner et al. 2025: 6). Infolgedessen geraten diese Menschen in prekäre Lebenslagen. Sie sind mit der fehlenden Anerkennung körperlicher Krankheit und der Verweigerung sozialer Leistungen konfrontiert und müssen gegen falsche Deutungen, schädigende therapeutische Interventionen und die Abwertung ihrer Selbstorganisation vorgehen. Aus den Erfahrungen der Erkrankten resultieren Ableitungen für die Soziale Arbeit. Als Bezugswissenschaft der Medizin steht sie vor der Heraus-forderung, sich zu struktureller medizinischer Gewalt zu positionieren. Dabei sollten Betroffenenperspektiven gestärkt und gegen institutionelle Invalidierung verteidigt werden.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 06/09/2026

Registration now open for the annual #MCAS conference! 👇👇 ismcas.org/2026-ismcas-an…

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026

Indeed, this is so horrofic, and it is very important that this reaches beyond ME groups or those already affected.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026

Unfortunately, this was a closed and non recorded talk. And I used spontaenous writing on a blackboard (see the background), as I wanted this to have a more natural flow rather than a (often rather boring) PPT run through. As soon as I can share other material I will 🫂

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026

Oh and resouces both in terms of economic but also especially social and cultural capital...

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026

Oh yes, like I said so much more to say on it. But I had less than 1 page for the conference. I would also add the ethics of euthanasia to this too (one of my funded projects). The list and issues are extensive....

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026

Today I presented on the #ethical harms and logical errors of the many #child abuse allegations in pediatric #LongCovid and #MECFS. This was part of the Socrates Stichting Summercourse. The audience was clearly shocked and moved. Lets hope, this is another drop towards change.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 28/08/2026

Of course there is a lot more to say on Postinfection #Ethics, but for the @ISLCPAIS conference organised by the amazing Rob Wüst and (the equally amazing!) Michael Chapman (who truly moves mountains... ), I wrote the following summary www.viviennematthiesboon.com/post/what-is...

viviennematthiesboon.com

What is a Postinfection Ethics?

From within the field of Ethics, there is so much to say about Postinfection Ethics - how it related to the fields of Public Health Ethics, Bioethics, Infectious Disease Ethics, but also to Care Ethic...

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

So congrats to the colleagues at MAH for putting together and organising such a successful course. And I look forward to the further collaborations. 6/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

This is currently part of work in progress with a larger team & is to be continued. What is also to be continued are the creative outputs of the summerschool itself - organised by Petra Verdonk. I look forward to that, as the last session on this was particularly inspiring. 5/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

And then today, I presented on the ethical problems of child abuse allegations, rife amongst MECFS pediatric patients.Outlining the conceptual problems w MbP and medical child abuse & the ethical consequences, i argued we need to move away from attitudes of radical suspicion. 4/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

Then on Wednesday I shared a session with Phillip Theis. After I argued for the need to defatigue MECFS (and to place its psychologisation in a historical medical & societal perspective), Phillip explained how to best differentiate MECFS from psychological conditions. 3/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

In terms of #MECFS, together with Jochen Stiepel and Sophie v. I., we discussed patient experiences of MECFS on Tuesday. We also particularly discussed the most severely affected. Sophie is the mother of Rosa in Kleve, also see here: 2/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 21/08/2026

Bye bye Hannover, where the Fatigue X summerschool organised by Christine Happle & colleagues took place. This interdisciplinary course took the concept, practices & experiences of fatigue under the loop. Topics included MECFS, planetary health, cancer & rheumatology a.o. 1/6

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 17/08/2026

Before Acetazolamid my daughter was also worst in the morning, and then end of the afternoon/evening again...

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 17/08/2026

This is such an important and insightful blog by @privilegienschreck.bsky.social !!! If you dont read German, put it through a translation site. It is 💯% worth your while! 👇 #LongCovid #PAIS #MECFS #recoverystories

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 14/08/2026

So this letter, as a source of motivation, has now found a special place in my workroom. #LongCovid #MECFS #MCAS #Habermas #Criticaltheory #Philosophy

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 14/08/2026

And it also heartens me as the journey continues, not only towards the application of this different notion of trauma to Long Covid and MECFS (Matthies-Boon, 2025), but also as I believe his philosophy can give us the building blocks to move out of psychologisation as such...

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 14/08/2026

I recently cleaned up my room and came across Jürgen Habermas's letter about my book on trauma in Egypt. There, I used his philosophy to dissect the concept of PTSD and build a very different (not-psychologised) notion of trauma. His response, so kind, still touch me so deeply.

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Reposted by Prof. dr. Vivienne Matthies-Boon

Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

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.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

Du hast sie da in Essen gesehen. Sie schafte damals noch nicht mal 20 min Liegendemo (nur liegen) ... is echt Irre.🫂🫂🫂

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

Danke für den Tipp, ich wüsste dass Göttingen sich schön interessiert in IIH, aber Freiburg war mich noch nicht bekannt. Finde es schade/ärgerlich, dass bislang der IIH im Zusammenhang mit MECFS noch nicht besonders viel Aufmerksamkeit geschenkt wird.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

What is more IIH is, as far as I know, currently not seriously included in #MECFS research. Which makes us entirely dependent on well willing individual doctors to look a bit further, and on older articles like that of Higgings 2017.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

Without this hallmark and hesitancy to do lumbar punctures, means IIH amongst MECFS patients is often overlooked - and (again!!) falsely pushed into the psychosomatic corner.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

What i find troublesome is that eventhough many children with #MECFS have IIH (as evidenced by lumbar punctures), they often do not have pupil dilation.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026

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! 🤪

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Reposted by Prof. dr. Vivienne Matthies-Boon

Cat Fraser @catsocialintel.bsky.social · 10/07/2026

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.world

#Protecthumanbiosystems

An international campaign to protect humans like we protect the environment.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 09/07/2026

But also the pressure being put on you, as in only you can do it, is doudle-edged no? flattering and good (also in terms of inclusion of the right kind of voices) but also burdensome...

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 09/07/2026

And i do think that the hyper neoliberalisation of academia has resulted in this job being one one is not allowed to take a break from. And i also wonder what role this plays in other people using/nicking your stuff.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 09/07/2026

Totally! I also was specifically referring to able bodied academics relentlessly pursuing FOMO as a matter of gratification not necessity. Personally i was speaking from a very privileged position in a double sense (meds and jobwise).The pressures and injustices you mention are very real indeed.

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Reposted by Prof. dr. Vivienne Matthies-Boon

ME Association @meassociation.org.uk · 09/07/2026

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: meassociation.org.uk/.../campaigns/… #SevereME #MECFS #SevereMEWeek

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 09/07/2026

Oh yes, you are definitely right that this is older than a few decades. It is just that since the last few decades it appears it is increasingly spiralling out ot control. But I might be mistaken here of course...

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