News from Austria and Switzerland

Found an interview in English with Michael Stingl, Austrian neurologist who specializes in ME/CFS.

Long-Covid treatment: instead of inaction – use existing medication!

As a doctor, what do you need to better treat patients with ME/CFS and Long Covid?​

The big problem with ME/CFS is that we don’t know the one underlying mechanism. We have to diagnose based on symptoms and there are probably different causes that cause a very similar clinical picture. I am involved in a project at the University of Vienna in which questionnaires are used to try to distinguish between clinical subtypes and to see what the possible causes are.

The therapies depend on that?

Yes. There are many hypotheses. That it could be an autoimmune reaction is one of them. Such antibodies are found in 30 to 70 percent of those affected. Whether they really have the basic pathophysiological relevance is not yet clear. But if you have auto-antibodies, for example, you could use BC007 [von Berlin Cures, Anm. d. Red.] help. If you don’t have autoantibodies, it doesn’t make sense.

If the studies show that BC007 works, then the pharmaceutical industry will take an interest. Then I’m reasonably optimistic that new medicines will be found in the next few years. This has also been seen in multiple sclerosis. 30 years ago you had nothing and now there are numerous drugs that can often stop this serious neuroimmunological disease.


Until then, are you treating with existing medications that you give off-label?

I don’t promise anyone salvation, I can’t. Normally, nothing makes the symptoms go away. But the point is simply that you can at least produce an improvement in performance. In the guideline of the Austrian Society for General Medicine there is now an addition to the Chronic Fatigue Syndrome, which basically contains what I am trying to do pragmatically. We cannot wait for evidence to be generated and meanwhile do nothing!

See this thread: Long Covid drug BC-007 research news
​

 

From: Dr. Marc-Alexander Fluks
Subject: Austrian Magazine Prize 2022 goes to ME/FM paper



Source: Originaltext-Service (OTS)
Date: September 22, 2022
URL:
https://www.ots.at/presseaussendung...erausragende-journalistinnen-und-journalisten
https://www.ots.at/presseaussendung/pdf/OTS_20220922_OTS0202
Rem: Google translation from German to English

https://www-ots-at.translate.goog/p..._sl=de&_x_tr_tl=en&_x_tr_hl=nl&_x_tr_pto=wapp


Austrian Magazine Prize 2022: OZV honors outstanding journalists
----------------------------------------------------------------
Award ceremony at the 29th Austrian Media Days – an overview of the
winners in the five categories

(...)

In her article 'You're missing nothing', published in the news magazine
'profil', Ruth Eisenreich addresses the suffering of patients, for whose
physical complaints no medical explanation has been found in some cases
for years. The text explains what can be behind such symptoms and
describes the difficult situation and the suffering of those affected.
In addition, the article offers a brief insight into the clinical
pictures of fibromyalgia and myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS), which have also become more well-known in the wake of
Corona. Ruth Eisenreich was able to win the category 'Science,
Technology and Research' for this treatment of a topic that has received
little attention up to now.

(...)

--------
(c) 2022 OTS

 

This is a translation of Ruth Eisenreich's article "Misdiagnosis and objections: "You're not missing anything"". I like how she explores the topic fairly, without making assumptions, provides balanced examples and a rational perspective which is not dismissive of unexplained symptoms.

https://www-profil-at.translate.goo...tr_sl=de&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=sc

 

I really don't think that people expecting medicine being able to explain everything is a thing. It's really odd seeing it written like it's a well-known fact when it's not even a real thing.

It's made even more bizarre that this belief seems to exist only within medicine itself. The only actual instance of this is the odd quote from a physician reacting to a new finding with the standard "uh, I guess we don't know everything, after all". To which: duh, no one thinks that. In fact most people are well aware that not only can't they explain most things (yet, it's a work in progress), they usually can't do much even when they do (yet, also a work in progress). A lot of people avoid going seeing a doctor because of that, they know it's useless in their case.

I just think it makes more sense to start from a real premise, not an imaginary one. I'm sure there are people who would agree to it without thinking about it, but it would be very short-lived or easy to pick apart. But it's weird seeing a very fringe belief very few people have framed as a near universal belief that really only seems to exist within the profession itself.

 

Fair point but I think its a useful argument to publish and its helpful that it won a prize, because it opposes the BPS brigade's attempt to encourage doctors to assume MUS (medically unexplained symptoms) are psychosomatic.

The moment one admits there is much we do not know about diseases and symptoms, then one cannot justify assuming MUS are psychosomatic. So its constructive as a slow and deliberate tortoise argument which trips up the BPS hare(-brained) conceit, which seems to be predicated on the delusion of omniscience.

 

https://twitter.com/user/status/1587472046585430018


eta:

https://twitter.com/user/status/1587479309337362433


Iwasaki.

 

The situation with the Austrian petition is a bit confusing to me (you can find comments about it earlier in this thread but it also had its own thread here). Because I remember how the government reacted to it was disappointing. But now CFS Hilfe, the Austrian patient org posted this on Facebook.

Facebook translation:

If you follow the OTS link, this is the text from the Green Party (DeepL translation):

 

From the Austrian ME/CFS patient org's FB page.

Fb translation:

Here are the links of the press releases from the FB post, translated to English with Google translate:

Green party press release
People's Party press release

 

Thanks for sharing. Sounds like good news. The text of the Green party says that the motion was supported by all parties. I suppose the next step is to get the resolution passed in the plenary sitting of the parliament (not just in the health committee).

Also: does anyone have a link to the text of the motion?

 

FB post from Michael Stingl, Austrian neurologist interested in ME/CFS and who is also actively trying to help the situation of pwME.

FB translation:

 

Direct link to the text (html) here.

Website: https://www.parlament.gv.at/gegenstand/XXVII/I/2009 -> "Dokumente" -> "Entschließungstext"

 

Thanks. It's a rather short text apparently. I've pasted an English translation using DeepL below.

Regarding ME/CFS: Recognition, medical care & protection of affected persons as well as research funding
The Federal Government, and in particular the Federal Minister of Social Affairs, Health, Care and Consumer Protection, is called upon to continue and intensify its efforts to improve cooperation between the actors in the health care system and thus to improve diagnostic and needs-oriented therapeutic care for ME/CFS affected persons in Austria. Among other things, it would make sense to create an advisory board composed of relevant experts who deal with post-viral/post-infectious syndromes. Furthermore, the Federal Minister should advocate greater consideration of post-viral/post-infectious syndromes in medical guidelines, with the involvement of the self-help groups concerned.

The Federal Minister for Education, Science and Research and the Federal Minister for Social Affairs, Health, Care and Consumer Protection are requested to work together with the institutions responsible for education and training to promote the interdisciplinary exchange of specialist medical disciplines on post-viral/post-infectious diseases and in particular on ME/CFS, and to support scientific research.

 

Just came across this on Twitter, thought It'd be nice to post:

"Ella, Milas' twin sister, is a first year's student of medicine at MedUni Vienna and has just learned in a class on sport myths that sports and activation ar contra-indicated in ME/CFS."

https://twitter.com/user/status/1659957835927633923


(Someone responds that it's still an exception, but the future has started.)

 

From @MSEsperanza –

Via Martin Rücker/ Mastodon:

"Schwer von #MECFS betroffene Künstler*innen haben in einem großen Kraftakt eine Ausstellung über ihre Erkrankung geschaffen - zu sehen aktuell im Künstlerhaus #Wien:
https://www.kuenstlerhaus.at/besuch/kalender/ausstellung/445/crash.html – am 18.8. gibt es zudem ein Symposium mit Performance:..."

https://metalhead.club/@martinruecker/110887663475109701


Deepl translate:

"Artists severely affected by #MECFS have created an exhibition about their disease in a great feat of strength - currently on display at Künstlerhaus #Vienna:
https://www.kuenstlerhaus.at/besuch/kalender/ausstellung/445/crash.html - on 18.8. there is also a symposium with performance:..."

https://www.kuenstlerhaus.at/besuch/kalender/veranstaltung/1413/crash.html

Google translate link:

https://www-kuenstlerhaus-at.transl..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

 

With works by
Christina Baltais, Broken Battery, Ruth Braham, Martine Brandt, Whitney Dafoe, Sibylle Dahrendorf, Faraz Fallahi, Franziska Hannig, Mila and Sabine Hermisson, Hazel Hughes, Sunniva Innstrand, Noli Kat, Matthias Mollner, Renate Mowlam, Martin Keogh aka The Missing Neighbor, Olivia, Kristine Cornelia Paulsen, Anna Parker, Judith Schoßböck, Ilse Sjouke, James Strazza, Mark Tuschman, Anil van der Zee

 

Some English language info on exhibition and Black Ferk Studio
https://blackferkstudio.com/en/home-en/