News from Austria and Switzerland

Article in Swiss news about 12 year old with Long Covid who is unable to attend school (in german)

https://www.nau.ch/news/schweiz/cor...gen-long-covid-nicht-mehr-zur-schule-66785816

Claude AI english translation:

Highlights:
* Talks about exercise intolerance and worsening
* Features commentary on the fact that the swiss government hasn’t even bothered to estimate the number of people suffering from long covid
* Highlights the fact that her doctors dismissed it as depression, and disability benefits application treat it as a psychological problem
* Unfortunately at the end goes into detail about an unproven “blood washing” therapy

 

News Release from Swiss parliament (translated)

On September 11, 2024, Federal Councillor [one of the leaders of the executive branch] Baume-Schneider spoke in the Federal Parliament on the motion by Yvonne Feri, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Care Situation." The motion was indeed withdrawn by National Councillor Barbara Gysi after a long statement, following consultations with Ms. Feri, but with these meaningful words: "We don't need more reports, we need to act now." The Federal Councillor took note of this and confirmed that the desire to act now exists within the Federal Office of Public Health (FOPH).

https://www.mecfs.ch/blog/mecfs-postulat-parlament-bundsrat-schweiz

 

Post-viral syndromes: New National Reference Center opens at the MedUni Vienna
https://www.meduniwien.ac.at/web/en...-reference-center-opens-at-the-meduni-vienna/

The Austrian Ministry of Health has commissioned the Medical University of Vienna to establish a National Reference Center for Postviral Syndromes. The center will advance research into post-viral syndromes and offer training for healthcare professionals. Around one million euros will be made available for this purpose. The new National Reference Center will be headed by Kathryn Hoffmann and Eva Untersmayr-Elsenhuber.
...
As a renowned expert in the field of post-viral diseases, Eva Untersmayr-Elsenhuber and her team are currently setting up the first Austrian biobank for ME/CFS
...
In particular, the reference center will promote healthcare research and training of the healthcare staff involved in post-viral syndromes.
...
The coronavirus pandemic has given additional importance to post-viral syndromes such as Long COVID and ME/CFS. In Austria, it is estimated that up to 80,000 people are affected by ME/CFS alone. Due to the lack of a clear biomarker, the path to a correct diagnosis is still lengthy. Disease patterns and treatment options vary greatly. Different medical disciplines often have to work together to care for those affected.

 

In Switzerland, a Long COVID treatment trial for a potassium channel blocker had to be discontinued because most of the patients interested were of too poor health to undergo the cognitive testing and trips required.

From AargauerZeitung (in german) (translated)

Researchers from the University of Basel, led by neurologist Dominique de Quervain, were pursuing another approach: They aimed to test the drug Fampridine on Long-COVID patients. Fampridine blocks the potassium channel, enhancing neurological functions in patients with multiple sclerosis.​

In July, de Quervain mentioned that interim results were expected soon. But when asked again, the neurologist now states: “Unfortunately, we had to discontinue the study due to recruitment difficulties.”​

For many Long-COVID patients, participating in the study was too demanding: Participants needed to travel to Basel five times and undergo extensive cognitive tests. “This was too much for many patients, who often suffer from severe fatigue,” says de Quervain.​

In the end, only seven patients completed the study instead of the 44 planned. Unfortunately, no reliable conclusions about the effectiveness of Fampridine could be drawn from such a small sample size, according to de Quervain.​

 

That really doesn’t sound like something we’d do in Switzerland. Though I have no medical experience so what do I know. But culturally doctors are very highly regarded and would never ask patients this kind of stuff.

I obviously wish/hope they do do it.

I have to note I appreciate the “no reliable conclusions could be drawn” with n=7, instead of publishing a study with 7 participants claiming the drug works.

 

This looks like a very successful grant round at the university of Vienna:
https://twitter.com/user/status/1849126235940544859


The WWT and WE&ME Foundation provided funding for a call on Understanding ME/CFS of maximal 100.000 euros in funding per project. They received 13 applications and 7 were funded. These include research on severe ME, rare genetic mutations, mast cell activation, and skeletal muscle metabolism.

The funded projects can be found here:
https://www.wwtf.at/funding/programmes/ei/#ME-CFS24

The Austrian ME/CFS organisations Tweeted that there are plans for a second round of funding.

 

Yay, I'm finally getting the study of rare genetic variants in ME/CFS that I wanted.

 

It looks like these studies are all going to be rather small, but seeing so much biomedical research funded is exciting. Way to go, Vienna. Funnily enough, if I never got ME, I would still be living in Vienna.

 

Good news. Switzerland solved Long Covid. Well, the government sent out pamphlets to raise awareness. Only took them 4 years. Surely it will be solved quickly. Because if there's something that emphasizes the urgency of a public health crisis, it's definitely sending a pamphlet years later and doing nothing else about it.

Long Covid cases in children are exploding - now the federal government is responding
https://www.bluewin.ch/en/news/swit...e-federal-government-is-reacting-2426856.html

In Switzerland, the number of Long Covid cases in children is rising. The FOPH has published an information sheet to support schools, while organizations emphasize the urgency of the situation.
...
The number of children and young people affected is steadily increasing, as a press release from Long Covid Kids Switzerland and ProtectTheKids Switzerland shows. Around 300 families, mainly from German-speaking Switzerland, meet in online groups to find support. The most common symptoms include exhaustion, tiredness and cognitive impairment.​

So hard to say whether LC has anything to do with ME/CFS. I guess we'll never kno...

Post-exertional malaise (PEM), which leads to a worsening of symptoms after little exertion, is particularly severe. Claudia Schumm criticizes the fact that it often takes too long for affected children to receive support at school. The canton of Thurgau is the only one to have issued a regulation for individual tuition, but this is not sufficiently communicated.
...
Medical care is inadequate and many pediatricians are overworked. Claudia Schumm emphasizes that the children's suffering is exacerbated by a lack of understanding on the part of adults. Some children are so severely affected that they can no longer leave their beds, which leads to a loss of education and social contact. "We have children and young people in our group who have said that they no longer want to live," Schumm told Blick.​

 

Wow you weren’t kidding. The article summary would be hilarious if it were a joke.

Thank god the politicians have come together and made a pamphlet. Now thanks to this pamphlet, the cases will start dropping again.

 

Same