News from Austria and Switzerland

Over the years there has been lots of people suggesting that running TV ads is the way to go to raise money so it will be very interesting to see how this goes:

 

Looks good, was looking at their website and it looks like they're funding the right kind of projects too. Our fundraising has been abysmal for obvious reasons. Hope this helps.

 

Does anyone know if there is a french speaking branch or french speaking equivalent of the Schweizer Gesellshaft für ME (the Swiss ME association). I used to be able to speak german but severe me + brainfog means I have to limit myself to french and english. I literally can’t find any ME association that works in the french side of Switzerland though.

 

Merciii I didn’t think of that

 

If anyone is looking for it in the future

pas d'association francophone à ce jour en Suisse. Un petit groupe travaille avec l'organisation suisse allemande pour traduire le site en français. Vous poyvez les rejoindre sur le groupe Fecbook EM/SFC Suisse
https://www.facebook.com/groups/194371634040745
​

Translation: no association but there is a facebook group

 

Merged thread

Austria - best clinical infrastructure for #MECFS patients on the planet (not that difficult, I know..)

Interesting - wonder what this will deliver - one to watch
https://twitter.com/user/status/1787843224834392545

 

Millions missing protests infront of parliament in Bern Switzerland yesterday, featuring some wonderful people (and my shoes)

I chatgpt translated the french article on it:

Around 400 people protested on Saturday at Federal Square in Bern for better care for patients suffering from myalgic encephalomyelitis, also known as chronic fatigue syndrome, which can sometimes result from long Covid.

The participants expressed "profound distress." They laid out 300 pairs of shoes, representing the 300 patients who would have liked to join them but couldn't due to being too weak, according to the organization representing the affected patients.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is also known as systemic exertion intolerance disease. This condition is so debilitating that affected individuals cannot carry out their daily tasks. Most patients are women between 30 and 50 years old, for mysterious reasons.

Not enough specialist doctors
There are few doctors in Switzerland capable of treating them, the organization notes, estimating the number of affected patients at 60,000.

Chantal Britt, president of the Long Covid Switzerland association, is one of the organizers of the protest. She called on Saturday in the Forum program for Switzerland to establish "centers of expertise" and promote research on ME/CFS. "We need to start understanding these types of diseases in order to diagnose, treat people, and make evidence-based decisions," she said.

Eric Nussbaumer, president of the National Council (PS/BL), who was present at the protest, also lamented the lack of qualified personnel in Switzerland.
​

https://www.rts.ch/info/suisse/2024...u-syndrome-de-fatigue-chronique-28499381.html


Was really suprised by how well written this was by the state funded news source. Looks like they interviewed the right people and didn’t interview any sceptical doctors haha…

 

Statistic from new report, only 3.6% of those applying for disability benefits in Switzerland with long covid were accepted.

According to the CH Media Group, more than 5,000 people have applied for support due to the consequences of Covid since 2021. To date, 3.6% of the people concerned have received support from the invalidity insurance, according to an initial assessment by the Federal Social Insurance Office.

Of those claiming to suffer from long Covid, 60% have been refused support with the remainder receiving help to prepare them to return to work.
​

https://www.swissinfo.ch/eng/life-a...the CH Media,consequences of Covid since 2021.

​

 

Swiss govt long covid advisory group not showing up with no explanation to meetings with swiss long covid organisations.
https://twitter.com/user/status/1790787826629447950

 

Training with side effects
ME/CFS and post-Covid are new territory for many medical professionals. This makes continuing education all the more important. But sometimes the content taught can be harmful to patients.
https://www.dossier.at/dossiers/aktuelles/fortbildung-mit-nebenwirkungen/

For a long time, the disease was not part of medical training. That is why continuing education for doctors is crucial: doctors should learn how to properly treat sick people in practices and outpatient clinics and accurately assess their state of health. After all, they sometimes have to assess post-Covid patients for the recognition of social benefits. By law, doctors are even obliged to regularly attend continuing education courses in order to stay up to date.

But as DOSSIER research shows, training courses on the topic of post-Covid and ME/CFS sometimes contain questionable content that is criticized in professional circles and can ultimately even harm patients. This was also the case at the annual conference of the ÖGN in the Hofburg, which doctors can count as training.
...
A clinical psychologist and court-certified expert will give a lecture there in mid-March 2024 on the topic of "complaint validation" - a sensitive area: It is about how psychologists and doctors can assess complaints in terms of their truthfulness - for example in the context of preparing an expert opinion.

The psychologist begins her lecture with a comparison: while doctors treat patients who want to get well, as an expert in neuropsychological diagnostics for labor and social courts she is "more likely to deal with patients who do not want to get well." She also gives a reason for this: these people gain "access to attention" and "a very large benefit from the illness" through the illness. In medicine and psychology, this is the term used to describe advantages that can accompany an illness - such as pension payments or care from relatives.

The speaker then brings up a remarkable figure: in her field, she has to assume that 70 percent of clients are faking. An extremely high percentage – but one for which DOSSIER could not find any evidence.

When asked, the expert said that she had not taken the figures from statistics, "but from her own practice." She explained: "The quote you gave from me is missing an important detail. In my work, I find that around 70 percent of clients aggravate or gloss over their performance. I also made a comparison here with traffic psychology, where I can observe an opposite phenomenon in the area of dissimulation."

The "70 percent" also includes candidates for a driving license and traffic offenders who downplay limitations on their ability to drive. This has little to do with post-Covid and ME/CFS.
...
DOSSIER took part in another training course in which questionable content was conveyed: Under the title "ME/CFS - a syndrome without objective diagnostic criteria?" the Association for Psychiatry and Neurology organized an online lecture in mid-April 2024. A neurologist from the Vienna AKH was invited as the speaker.

The summary of her lecture to 42 listeners: Since the cause of ME/CFS is not clear and there is no causal pharmacological therapy, i.e. no medication, ME/CFS should be understood as a psychosomatic illness that can be treated with behavioral therapy. This would mean that the psyche plays an important role in the development of the illness or its maintenance.

The assumption that ME/CFS is a psychosomatic illness is not only heavily criticized in professional circles. According to long-standing ME/CFS experts and patient organizations, it also has fatal consequences for patients: incorrect treatment.

Although there are studies that document an improvement in the health of ME/CFS patients after behavioral therapy, their scientific validity is doubtful.
...
When asked by DOSSIER, the speaker at the ME/CFS training course run by the Association for Psychiatry and Neurology sees things differently. She says: "The largest and most successful therapy studies for reducing fatigue in ME/CFS are behavioral therapy studies, as shown by several meta-analyses." However, she bases her findings on studies whose validity was questioned by the British health authority NICE or which it did not include in its comprehensive review due to inadequate methodology .

The meta-analyses that the speaker cited as sources to DOSSIER also refer to studies whose validity was questioned by NICE. In one of the studies, the authors themselves even point out that the effectiveness of behavioral therapy is uncertain .

Nevertheless, when asked by DOSSIER, the Association for Psychiatry and Neurology, which organized the event, also agreed with the statements made by its speakers.
...
However, the professional association ÖGN may have to answer questions from the Medical Association: "We take every allegation seriously. The Academy of Doctors will investigate this," the Medical Association told DOSSIER.​

 

Tweet from Dossier, which bills itself as investigative and data journalism:

Features a predictable reaction from the German Wessely, Kleinshnitz, who is not outraged at the abuse patients get, but is at anyone who reports this abuse:

Can't read what it says, I'm blocked by this account even though I never interacted with it, but something about activists, or whatever.

Honestly, after 4 years of this, on top of decades of abuse and discrimination, this has gotten worse than what the tobacco companies did. They're for-profit enterprises, morality is not part of their reason to exist. MDs, on the other hand, are not supposed to be on the abusive side, certainly not so fanatically. This outrage against righteous outrage is some of the ugliest that human nature can do.

 

"The psychologist begins her lecture with a comparison: while doctors treat patients who want to get well, as an expert in neuropsychological diagnostics for labor and social courts she is "more likely to deal with patients who do not want to get well." She also gives a reason for this: these people gain "access to attention" and "a very large benefit from the illness" through the illness. In medicine and psychology, this is the term used to describe advantages that can accompany an illness - such as pension payments or care from relatives."

Yup, so those that pay her, dictate what she thinks, for her career and financial gain

I cannot think of a single patient I've ever met who didn't want to get back to work, or caring or being able to care for their children / grandchildren. Breaks their hearts the multiple losses they face....

"Access to attention" is astonishing. Most pts lose the majority of their social networks especially if they rarely get out. Just garbage. No objective evidence to back up her claims...... After a few weeks or months of ill health others move on.....

Every lawyer and psychologist working in civil court knows the name of one or two clinicians who appear content to write dross reports (they tend to read largely the same with different patient details). It's lazy, harmful, spiteful and the rest.

Some psychologists/psychiatrists quite like to get out there 'promoting' their services too. And when one well dries up they move on to the next.

I think some judges have got bored with some experts in civil courts in last few years. They must see it all

 

It's also especially ridiculous to have this "no medication available, no disease" rationale. It's so obviously wrong, lots of diseases have zero approved treatments, this isn't even a real argument. But it shows just how loose these people are with the facts, to the point where they directly contradict many things they know to be true, many principles of their profession, as exceptions, for no other reason than otherwise their opinion can't be right. Which is usually a giant clue that you aren't right, but it's all popular and defended to death, ours but still, so it just goes on.

Feels more like a king or emperor who makes some nonsense proclamation, like those that went as far as to say that the Sun rises because of them.

 

Switzerland has rejected by around 75% the far-right referendum seeking to ban vaccine mandates and ban anti-covid measures in the constitution


A referendum for affordable healthcare started by the left (aiming to cap health insurance costs at 10% of income) has also failed with just under 50%.

 

If we're pitching theories, I think it's just lord Chtulhu working in nefarious ways.