News 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
 
Last edited:
That's an interesting site, sympathetic to people with ME/CFS and mostly accurate. e.g.
So far there is no generally available therapy that combats the causes of ME / CFS. Those affected therefore usually have to find an individually tailored therapy to alleviate the symptoms. However, since these therapies are very tailored to the individual and it often takes years before a specific therapy is found, the search for a treatment is associated with a considerable physical, psychological and financial burden for the patient.

The US Centers for Disease Control and Prevention (CDC) does not recommend therapies based on physical activity or exercise for ME / CFS patients in its treatment guideline . In contrast to other illnesses with pronounced exhaustion (e.g. underlying depressive illnesses), activation leads to a worsening of their condition in ME / CFS sufferers.
Click to expand...

There are potentially useful links, including to the Austrian Society for ME/CFS.
 
Further on the Austrian Society for ME/CFS, the bits of that website I have seen look very good. There's information for doctors, research summaries, a record of media articles...

Therapy & Treatment
There are currently no approved drugs or causal therapies. However, there are symptomatic treatment options that can improve the general condition of the patient, as well as recommendations that enable a better management of the disease. Treating symptoms can provide relief in some people with ME / CFS but not in others. The careful use of energy reserves (“pacing”) is also very important. Activation or other stresses can worsen the symptoms and the course of the disease.
Click to expand...

The assumption that has long been widespread, especially in the German-speaking area, that ME / CFS can be successfully treated with exercise or rehabilitation therapy is based on false assumptions that were allegedly proven in a study (the so-called PACE Trial 58 ). Scientists, doctors and patients strongly criticized the methods and criteria used in this study. 104, 105, 106, 107, 108, 109, 110, 111, 112, 113The American Center for Disease Prevention then and as a result of the clear evidence, according to the commissioned expert council, removed graduated exercise therapy (GET) and cognitive behavioral therapy (CBT) from their treatment recommendations. 13, 14
Click to expand...

There's a very recent report:
THE ME / CFS REPORT AUSTRIA 2021 IS HERE!
All data and information are based on current studies and an Austria-wide survey among patients. With the help of doctors, scientists and many voluntary helpers, we are able to present a report on the situation of ME / CFS sufferers in Austria that has never been done before.
Click to expand...
 
Video with English subtitles (haven't watched yet)

Click to expand...


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

Seems to be about:

MSEsperanza said:
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.
Click to expand...
 
Last edited:
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)
Program: Diagnose ME/CFS - What does that mean?
Moderator: Eva Untersmayr-Elsenhuber
Center for Pathophysiology, Infectious Diseases and Immunology, MedUni Vienna / CCCFS project manager

1:00 p.m. – 1:10 p.m
greeting
Eva Untersmayr-Elsenhuber
Center for Pathophysiology, Infectious Diseases and Immunology, MedUni Vienna

1:10 p.m. – 1:20 p.m
What is ME/CFS?
Michael Stingl
Specialist center Votivpark Vienna

1:20 p.m. – 1:30 p.m
The role of blood vessels in ME/CFS
Francisco Westermeier and Jennifer Blauensteiner
Biomedical Analysis, FH Joanneum Graz

1:30 p.m. – 1:40 p.m
The role of the immune system in ME/CFS
Lena Lutz
Center for Pathophysiology, Infectious Diseases and Immunology, MedUni Vienna

1:40 p.m. – 2:00 p.m
The situation of ME/CFS sufferers in Austria
Astrid Hainzl
Austrian Society for ME/CFS

2:00 p.m. – 2:30 p.m
CCCFS – the Questionnaire
Johanna Rohrhofer
Center for Pathophysiology, Infectious Diseases and Immunology, MedUni Vienna

2:30 p.m. – 3:00 p.m
How can research contribute to better patient care?
panel discussion

3:00 p.m. – 4:00 p.m
Break and cold buffet
Click to expand...

Part 2: Medical training on ME/CFS & Long-COVID (4:00 p.m. - 6:00 p.m.)
Program: Medical training on ME/CFS and Long-COVID
Moderator: Galateja Jordakieva
University Clinic for Physical Medicine, Rehabilitation and Occupational Medicine, MedUni Vienna

4:00 p.m. – 4:30 p.m
ME/CFS and long-COVID: an overview
Carmen Scheibenbogen
Institute for Medical Immunology, Charité Universitätsmedizin Berlin

4:00 p.m. – 4:30 p.m
ME/CFS and Long-COVID: Neurology and Clinical Aspects
Michael Stingl
Specialist center Votivpark, Vienna

5:00 p.m. – 5:30 p.m
Immunological Aspects of ME/CFS and Long-COVID
Eva Untersmayr-Elsenhuber
Center for Pathophysiology, Infectious Diseases and Immunology, MedUni Vienna

5:30 p.m. – 6:00 p.m
Orthostatic intolerance and postural tachycardia syndrome: clinical features and treatment options
Robert Wincker
Health and Prevention Center, Sanatorium Hera, Vienna

from 6 p.m
Discussion and conclusion at the cold buffet
Click to expand...
 
Last edited:
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.
Almost 27,000 people signed this petition, almost 20,000 of them from Austria. Thankfully, a politician brings the issue to the committee and discusses what to do with those affected
Click to expand...
Statements: Treasury says they can't do anything about research. The Ministry of Education does not want to: "The medical universities [...] see no further need for increased research coordination in the field of ME/CFS."
Click to expand...
And the Ministry of Health sees no need for action anyway. A slap in the face for everyone involved. Apart from these annoyances, there are many (voluntary!) statements from well-known people and institutions.
Click to expand...
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.


Whole thread:
Click to expand...
 
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?
 
Last edited:
rvallee said:
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.


Whole thread:
Click to expand...

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:
 
Wyva said:
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.
Click to expand...
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.
Wyva said:
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?
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom