News from Austria and Switzerland

Swiss national radio had an 7 minute “investigation” that from the description seems good.

(translated from german):

Long Covid: Incorrect Treatment in Rehabilitation Clinics

Patients report that their condition worsens after staying in a rehabilitation clinic: Long Covid or other post-inflammatory illnesses are often treated incorrectly in clinics. SRF reporter Kathrin Winzenried reports on dramatic cases in the program “Espresso.”
​

https://www.srf.ch/audio/espresso/l...n?partId=47160787-17e0-4b64-9b25-83fe5d97d04c

Haven’t listened myself since I can’t tolerate sound, and Switzerland is terrible for accessibility so no subtitles or script was provided.

 

There was someone in my FB group who lives in Switzerland and she mentioned how great it is that there are rehabilitation clinics for long covid there and she even said there were some special programmes for people that present with ME/CFS type symptoms (so people who have PEM, I guess?). She made it sound like a retreat where people can take some time off to recover and healthcare workers probably somewhat understand what ME/CFS or PEM is. Still, "rehabilitation programme" was a red flag to me.

Eventually I had to remove this person from the group - for various reasons, eg. promoting Alex Howard's book, name-calling other people who failed to recover or anyone who "didn't understand the complexity of the disease" unlike her. I really hope that this about the LC rehab clinics gets enough coverage in Switzerland and reaches people like her too (as well as everyone).

 

A lot of people in the local facebook groups seem to be convinced they will magically recover if they get send to a rehab clinic.

The psychotherapist I was going to visit until I became too severe was one of those people.

It seems that a couple of the first people who got Long COVID and loudest voices in these groups had a sort of 3-4 month illness trajectory, where their recovery coincided with going to one of these ridiculously expensive clinics.

And so atleast in the groups I was a member of, the “common knowledge” was that it would help you to go to a rehab clinic, and the admins shared that view.

 

Rarity of those programs and a constant renewal of the LC population are very effective at amplifying this.

Once people have gone through the programs, if they recover naturally a few will retroactively attribute it to it if they wish, but for everyone who remains ill this hope dies very rapidly, and they often don't hesitate to say so to others. But no health care system has the resources for more than 10% of the patients out there, most not even 1%, so the vast majority will be in waiting/hoping mode.

Whereas if they were common enough that most would go through them, they would be revealed as a sham. But since 90%+ never will, may be waiting for it in hope that it helps them, it retains some force as a potential. Because really everything in biopsychosocial ideology is about potential. The potential that it could work, if it did, which it doesn't. That it may work for you. It doesn't, but (movie trailer voice) imagine a world in which it does.

I saw a lot of that in the LC subreddit in the first 2 years. No more. But it's a general forum, whereas closed forums can be more restrictive, new ones keep popping up as a few new long haulers start duplicating groups around them and their personal experience of it.

I think this is the plot to Logan's run. When people reach the age of 30, they think they go to some magical place, instead of getting shredded. But you can't know this until it happens to you. Similar to the movie The Island. May you win the ticket out of here, you will be so happy and tell everyone about it. Just like in the LP.

 

Has it gotten better in the past couple months? I had to step away from it around 6 months ago because there was too much psychosomatic stuff, constant peddling of unproven treatments, and what seems to have been coined as “BioBS”, a bunch of people pretending they are the smartest person in the world and thus must know exactly what causes long COVID.

 

Now published as an Article in German.
https://www.srf.ch/sendungen/kassen...-me-cfs-falsche-behandlungen-in-reha-kliniken

Article is really good, multiple mentions of ME/CFS, and mentions a n>800 survey done by the local long COVID charity, rehabilitation made 50% of people worse and only improved 17%.

Also contains bits of the really sad story of one individual who was forced into rehabilitation as a condition for disability insurance, and deteriorated so much she’s now seeking assisted dying.

Translated Article: (For context EXIT is a euthanasia foundation.)

 

New Documentary on Austrian National Television (45min) (In German)

Much Suffering, Little Help – The Illness ME/CFS

Trapped in an Invisible Cage – that’s how life feels for many people affected by ME/CFS. This illness, with the complex name Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, turns even the simplest actions, like getting out of bed or brushing one’s teeth, into an ordeal.

Each day is an unrelenting battle against exhaustion unimaginable to healthy individuals, against pain, and against a healthcare system unprepared for their needs.


https://on.orf.at/video/14253831/15...k-1-viel-leid-wenig-hilfe-die-krankheit-mecfs

 

Almost none anymore and for a while.

 

Pretty absurd to say this, as this is exactly what they claim. Why else would they be referred those patients? But of course the problem is that there is no such thing as a clinic specialized in rehabilitating this kind of chronic illness, since it's not possible to do so.

But if they are not that, then what are they? Generic rehabilitation clinics? Of what use is that? And to whom? Because there is no evidence they provide any benefits to any type or combination of symptoms here. Whether it's chronic cough or loss of smell, none of this can be addressed generically.

But this is the nonsense that this industry has been building over decades, that they don't have to know or care what the cause of symptoms are, they can simply treat them generically. The scam only works when they can abuse the fact that they can't even tell the difference, that lots of people recover naturally, and that in LC many of those symptoms are bothersome but not disabling, which are basically used as freebies since no one can tell the difference besides the patients anyway, and this is exactly what they aim to manipulate just enough to get a false blip of a signal.

 

Article in Swiss state news about people with Long COVID (and PEM) going bankrupt because of disability waiting times.

(translated from french):

https://www.rts.ch/info/suisse/2024...s-la-precarite-28723610.html?rts_source=rss_t

Except for the lack of acknowledgment of severe people and the focus on fatigue, I found it to be a good article.

 

compare that to the 18’000 CHF per year disabled people (unable to work) who were disabled before getting their first job get. Very unfair system.