News from Austria and Switzerland

[Wyva]

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
​

 

[Dolphin]

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

 

[boolybooly]

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.

However, it is precisely this way of thinking in terms of diagnoses and classifications that can give rise to the unrealistic expectation in both patients and doctors that medicine can explain every complaint, no matter how small – and thus how to deal with symptoms for which it (for the time being) cannot find any justification, make more difficult.

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

 

[rvallee]

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.

 

[boolybooly]

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.

 

[Sly Saint]

eta:



Iwasaki.

 

[Hutan]

I'd been getting the impression of progress in Austria, with some interesting research having come out of there over the last year. But here's evidence that there's still a long way to go:
Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of current evidence 2023 Ludwig et al

 

[Wyva]

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:

Petition awarded to the Health Committee

At today's meeting of the Petitions Committee, the petition was handed over to the Health Committee with the support of all fractions. There she should be continued to be treated with content.

The assignment is a great, first success and we are very pleased that ME/CFS will remain a topic in the National Council. For the further trial, we hope for constructive treatment in the Health Committee and concrete political steps that will finally improve the situation of the ME/CFS affected people in Austria.

We would like to thank everyone who contributed to the success of the first hurdle. Thank you for supporting the petition, collecting signatures and writing statements. These statements have given a very touching and disturbing insight into living with ME/CFS. You can see them on the Parliament website: https://www.parlament.gv.at/gegenstand/XXVII/PET/80.

We would also like to thank all the members of the petition committee. We have received a lot of positive and supportive feedback from all fractions. Representatives of Fiona Fiedler , Hans Stefan Hintner, Nikolaus Prinz, Christian Ries , Andreas Kollross, Michael Bernhard , Heike Grebien !
OTS on petition decision: https://www.ots.at/amp/pr/OTS_20230322_OTS0097/

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

Grebien/Greens: Improving the situation of ME/CFS sufferers is key
ME/CFS petition assigned to Health Committee
Vienna (OTS) - "The assignment of the ME/CFS petition to the Health Committee, which was decided today in the Petitions Committee, is an important step on the long road to better medical care and more recognition of the disease. ME/CFS is still far too little known in Austria - even among experts. Most of the patients have been through a marathon of doctors and many years of incorrect treatment before they receive their diagnosis," says Heike Grebien, spokesperson for the Greens for People with Disabilities.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ICD G 93.3) is a severe neuroimmunological multisystem disease that causes deterioration of health after any exertion (post-exertional malaise) and pathological fatigue. Many affected persons are unable to work, can no longer leave the house or are bedridden. The disease leads to a considerable reduction in quality of life and great social isolation.

Long Covid has brought it more into focus. More and more people are developing ME/CFS after a Covid infection or other infections. According to international studies, between 26,000 and 80,000 people in Austria had the disease even before the pandemic. Worldwide, the number of people with the disease is estimated at around 17 to 24 million.

"Science and medicine should pay more attention to this serious disease so that suitable treatment options can be found. It is urgently necessary that there are competent contact points for those affected and that they receive the best possible therapy," says Grebien.

Grebien introduced the petition of the Austrian ME/CFS Society, which calls for recognition, care and social security for those affected as well as investment in research, to the National Council's Committee on Petitions and Citizens' Initiatives in November 2021. After a hearing and numerous statements by affected persons, relatives, medical professionals, institutions and organisations, it has now been referred to the competent specialised committee for health.

Translated with www.DeepL.com/Translator (free version)

 

[Hutan]

Detecting exhaustion with smart sportswear
Swiss team - there's potential for using the technology to quantify gait changes in ME/CFS.

 

[Dolphin]

 

[Wyva]

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

Fb translation:

Petition - proposal decided in the Health Committee

After the ME/CFS petition was handed over to the Health Committee at the end of March, ME/CFS was on the agenda there today. A “resolution motion” was submitted by 4 parties and it was decided with the consent of all factions.

The motion for resolution calls on the federal government and the Ministry of Health and Science to improve the supply of ME/CFS. The professional, interdisciplinary exchange and research on ME/CFS should also be supported.

Words from the press release:

"The assignment of the ME/CFS petition to the Health Committee, which was decided today at the Petition Committee is an important step on the long road to better medical care and greater recognition of the disease." Because ME/CFS is still far too little known in Austria - even in professional circles. The patients usually have a doctor's marathon and many years of maltreatments before they receive their diagnosis, " Heike Grebien, spokeswoman of the Greens for people with disabilities.
​

“Those affected by ME/CFS must finally receive the support they’ve been entitled to for so long.” The existing professional dispute within the Neurology society shows that there is still a lot to do," says Heike Grebien, spokeswoman for the Greens for disabilities, to whom she proposed for a resolution today.

"Chronic Fatigue Syndrome, or Chronic Fatigue Syndrom, also known as Myalgic Encephalomyelitis (ME) or ME/CFS, is a severe multisystem disease that especially affects Long Covid patients." Estimates range from 26,000 to 80,000 different people affected in Austria. Improvements in the field of research and supply structures are necessary," said today, Tuesday, ÖVP-Ag. Elisabeth Scheucher-Pichler, member of the Health Committee.

"Since we cannot decide any laws in this committee, we have only unanimously assigned them to the Health Committee for further processing in the previous plenary session," the ÖVP spokesman for petitions and citizen initiatives, Abg. Nikolaus Prinz, is pleased that already in today's committee through a resolution motion the government was called on to act.

https://www.ots.at/.../grebiengruene-versorgung-und...

https://www.ots.at/.../scheucher-pichler-brauchen...

https://www.ots.at/.../grebiengruene-verbesserung-der...

We thank you very much for the commitment of all the delegates in the Petition and Health Committee!

On behalf of all who have joined us at Ralph Schallmeiner , Heike Grebien , Josef Smolle, Elisabeth Scheucher , Nikolaus Prinz , Fiona Fiedler and Philip Kucher

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

 

[ME/CFS Skeptic]

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?

 

[Wyva]

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:

It's good to see how seriously #MECFS was discussed in the Austrian Parliament today - and that the petition for the Österreichische Gesellschaft für MECFS petition was accepted by all parties.

Very emotional speech by Fiona Fiedler and important contributions from, among others, Eva-Maria Holzleitner, Andreas Minnich , Heike Grebien , Elisabeth Scheucher.

Johannes Rauch wants to bet on trade unions - but these are partly also the ones that have blocked ME/CFS over the years and continue to block.
ME/CFS remains not part of medical training. Currently in neurology, where WHO ME/CFS actually ranks.
This should not be forgotten in this debate.

In that regard, it's great that at least the policy is taking important steps here.
The medicine will probably have to be partly convinced

https://www.parlament.gv.at/.../media.../XXVII/NRSITZ/209...

 

[MSEsperanza]

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?

Direct link to the text (html) here.

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

 

[ME/CFS Skeptic]

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.

 

[Hutan]

New paper out Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland 2023 Tschopp et al
Results of a survey of members of the Swiss ME/CFS Association.

 

[Arvo]

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."



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

 

[Kitty]

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

 

[Dolphin]

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

 

[Dolphin]

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

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

https://x.com/judyintheskynet/status/1693273950980120743?s=46&t=fB55_-omyDIDREBokX-E6Q