MSEsperanza
Senior Member (Voting Rights)
A thread for general news, events, articles etc from Austria and Switzerland.
Last edited:
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.
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.
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
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.
After surviving a # COVID19 infection, people can suffer from sometimes severe long-term consequences ( #LongCovid ). Research currently assumes that 10% of all infected people get “Long Covid”: https: // bit.ly/3qesvxa Thank you for talking about it
@neurostingl
https://twitter.com/OIS_Center/status/1511327292215209989
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.
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
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
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
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."
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.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.
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:
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.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.
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.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?