News from Austria and Switzerland

A thread for general news, events, articles etc from Austria and Switzerland.

 

Computer-based Clustering of Chronic Fatigue Syndrome Patients | MedUni Wien (Vienna)

https://www.meduniwien.ac.at/web/fo...stering-of-chronic-fatigue-syndrome-patients/


Google translate:

CCCFS - what is it?

Although there are clear internationally binding diagnostic guidelines, the diagnosis of myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) is only made by a few specialized doctors. One of the reasons for this is that there are currently no clear biological markers specific to this disease.

To make matters worse, the disease has different triggers, is chronic and the symptoms can change depending on the daily mood. It is also a multisystem disease, i.e. the symptoms affect several organ systems.

For these reasons, treating physicians currently only have the option of making a diagnosis of exclusion. This means that if ME / CFS is suspected, all other possible diseases must first be ruled out, taking previous illnesses into account.

Because the symptoms overlap with other diseases, ME / CFS is not always thought of first. This means that it often takes a long time to make a diagnosis. In Austria, that's about five to eight years.


Computer-based Clustering of Chronic Fatigue Patients (CCCFS)

In our project, we have made it our goal to do research for ME / CFS patients together with ME / CFS patients. Due to the long road to ME / CFS diagnosis, those affected are often true experts in their disease.

Together with ME / CFS patients, scientists and doctors from various specialist areas, we want to collect information about the disease by means of a detailed questionnaire. This is structured in such a way that it can be evaluated quantitatively, i.e. numerically.

This enables us to have the evaluation carried out objectively by a computer. The collected data are subjected to a so-called cluster analysis in order to find groups among the ME / CFS patients who have a similar disease course, received similar diagnoses and responded to certain therapies.

In this way, we want to connect lifestyle, symptoms, diagnostic markers and therapies with each other in order to be able to help ME / CFS patients more quickly to their diagnosis and appropriate therapies in the future.

[...]

Google translate link here

 

Article in Springer Medizin Österreich by Karina Sturm:

Karina Sturm: Chronische Erschöpfung ist so viel mehr als Müdigkeit | springermedizin.at / 2021-09-10

https://www.springermedizin.at/infe...fung-ist-so-viel-mehr-als-muedigkeit/19586090

google translate:

Chronic fatigue is so much more than tiredness

 

Signed.

 

Twitter bio says it's the Austrian medical association.

https://twitter.com/user/status/1480895534261063683

 

Video with English subtitles (haven't watched yet)

Code:

https://twitter.com/OIS_Center/status/1511327292215209989

Seems to be about:

 

https://twitter.com/user/status/1511791928307822592

 

CCCFS Symposium

This will take place at the Medical University of Vienna.

Google translate:

On May 9th (1:00 p.m. - 6:00 p.m.) we want to explain in layman's terms what we – ME/CFS sufferers and experts – have achieved in our project as part of a publicly accessible symposium. In addition, we want to give interested doctors the opportunity to take part in further training on ME/CFS and long-COVID.

The event will be organized in a hybrid way, so that affected patients will also have the opportunity to participate from home. Please note that due to the limited number of participants on site, it is necessary to announce whether you will be attending the event on site or online.

Programme:

Part 1: Diagnosing ME/CFS - What does it mean? (13:00 - 15:00)

Part 2: Medical training on ME/CFS & Long-COVID (4:00 p.m. - 6:00 p.m.)

 

https://www.volkstheater.at/event/1395443/iamhere-internationaler-me-cfs-aktionstag/


Google translate link:

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

 

This was originally posted by a member of the Austrian Green party and reposted by the Austrian ME/CFS organization CFS Hilfe. Those in the picture are members of the Green party, all wearing ME/CFS T-shirts (I think last year we saw the Austrian Minister of Health wear one.)

Facebook translation:

May is ME/CFS awareness month:
More awareness for ME/CFS disease and the situation of those affected.

Chronic fatigue syndrome ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has come into focus due to Long Covid.

More and more people are getting sick, for example, after a Covid infection from this severe multisystem disease.

They disappear from public life due to illness.
As Green MPs, we therefore set a sign for more awareness and support.

https://cfs-hilfe.at/iamhere/
#MECFS #CfsHilfe #IAmHere​

 

Over 20K people in Austria (and a few thousands more from elsewhere) signed a petition to get the Austrian government to do something about ME and LC. They refused everything. Everyone is shirking their duties.

And this is why performative virtue signaling of this sort is a bunch of nothing. It's borderline mocking us to pretend to help then refuse everything when it comes to their desk. Same thing with the German health minister. They talk, then refuse everything. Screw that, using us as backdrop to promote themselves.
https://twitter.com/user/status/1538775726970789888


Whole thread:

 

Of course I don't know the whole context of the situation but I remember that the Austrian health minister, Wolfgang Mückstein (the one wearing the ME/CFS T-shirt in the photo) resigned a couple of months ago.

The Austrian Health Minister Wolfgang Mückstein has announced his resignation less than a year after taking office, citing exhaustion due to managing the pandemic and death threats.

For Austria, it is the second resignation of a health minister since the start of the pandemic.

“I was aware of what I was getting into, that you can only do the job as minister of health by giving 100% every day,” explained Mückstein.

He added that having not been able to perform at the level he expected of himself, it had become time to resign.

Less than a year ago, Mückstein’s predecessor Rudolf Anschober resigned, citing the stress of managing the pandemic, which “felt like 15 years” to him, instead of the two he had been in office.

Similarly, managing the pandemic and the associated blowback had worn out Mückstein, he said. The “constant threats” and the constant need for police protection had left their mark, he added.

Austria continues to be the only country in Europe in which getting the COVID-19 vaccine is mandatory, but Mückstein said that the fights over this had not been the reason he resigned.
​

The death threats were coming from anti-vaxxers I believe.

Edit: @rvallee I've probably missed something. What happened with the German health minister? The last news for me was that they were allocating a couple of million euros for biomedical research. Have things gone downhill since?

 

There's going to be another meeting at least, so perhaps there's still a chance something will be done. If anyone is an Austrian citizen and over 16 they can support the petition by following the instructions here: https://twitter.com/user/status/1538775729500049409

 

Ah, well that's understandable. Shows how flimsy it all is to depend on political cycles to change anything. You can get support and the next week have to start all over again.

Not much happening that I can see. He talks, but doesn't walk. Either there are forces within medicine that simply stubbornly refuse, to the point of threatening to resign or worse, or he's just talk.

I saw a mention of a legislative proposal for 10M Euros, from the Bundestag VP, but it's just a proposal so far, AFAIK. German healthcare seems basically to consider psychosomatics a fact as real as gravity and can't think outside that box.

 

Think this is the official (and disappointing) response from the Austrian government:
https://www.parlament.gv.at/PAKT/VHG/XXVII/SPET/SPET_00550/imfname_1422549.pdf