News from Germany

petrichor said:
I'm not sure if it's just a general consequence of politicians promising things that they don't plan to deliver, but it seems common for politicians to make statements about increasing funding/taking action on ME/CFS, and then it going nowhere. It could be that there's some behind the scenes pressure from medical organisations or people in bureaucracies who don't want to give legitimacy to ME/CFS by giving it funding (which is an opinion that's sometimes expressed openly by some people).
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For a variety of reasons (mainly stigma) researchers with talent do not want to go anywhere near ME/CFS. Throwing money at the problem won't do much, unless you set up an in house study (like the NIH is doing) and sort of "pressure" people to work on it and set up very high standards. But that requires a specialized person who understands these things and wants to coordinate a team of capable scientists to figure out the problem. Politicians have no clue about any of this, so they just give funding to the clinics (which might seem to them like a sensible thing to do) because chances are that's what their advisors are telling them.

To make a hypothetical example, if we had the belief that cancer ought to be cured with chinese herbs, what politicians would probably do is give funding to chinese herb clinics. They have no background in science so you cannot really expect much. ME/CFS lands in this weird place where by saying words like "rehabilitation" "multidisciplinary care" and "treating the symptoms" you can get away with doing fuck all.

Science in medicine needs to change from within.
 
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Hubris said:
For a variety of reasons (mainly stigma) researchers with talent do not want to go anywhere near ME/CFS. Throwing money at the problem won't do much, unless you set up an in house study (like the NIH is doing) and sort of "pressure" people to work on it and set up very high standards. But that requires a specialized person who understands these things and wants to coordinate a team of capable scientists to figure out the problem. Politicians have no clue about any of this, so they just give funding to the clinics (which might seem to them like a sensible thing to do) because chances are that's what their advisors are telling them.
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Yes, there is a shortage of researchers interested in ME/CFS, because of stigma and other reasons. But funding in biomedical research isn't that easy to get, so if a dedicated amount of funding is set aside for ME, I think that will lead to researchers applying to get the funding (which is what has happened when that has been done). A lack of researcher interest isn't a barrier to setting up an initiative like that
 
The most important thing would be to address PEM. To give health care workers the knowledge of how to spot it and, if a patient is presenting with it, promote pacing.

From what we know so far that might be one of the few things that could help. At least stop progression.

But it's against what we believe in our society and economy and so we produce more and more pwLC that will end up in rehab facilities that will only help a few.

We've had so many campaigns for vaccines and on how to wash your hands with catchy slogans and nice little pictures. We need that for pacing.

Our health minister is aware, he has mentioned LC and ME publicly in talk shows etc. several times. I guess there's only so much he can do in this position.
 
There appears to have been an update to LC guidelines in Germany and they are a significant step back, which is saying a lot since they had very little to go on. Seems to have been driven entirely by the psychosomatic ideologues. Medicine is not only not rising to the moment, it is faceplanting harder than even before.

At this point it raises serious questions about exactly how many major issues are being ignored, because it's impossible for any system to miss something this big and high profile while not missing out on likely hundreds of smaller issues. It reveals massive flaws and blind spots that are likely all over medicine, ignored, neglected with no end in sight.

Update of the #LongCovid S1 guideline; Example chapter 8, general medical recommendations (left before, right new): #PEM as cardinal symptom v. #MECFS disappears at a central point. Instead, the main idea is to communicate a "good prognosis".
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in english
Chronic Fatigue Syndrome: Marina Weisband talks about her illness
My name is Marina Weisband and my body battery is dead.
I am politically active, stand up for democracy, have a family and a thousand hobbies.
And two years ago, half of them died.
I suffer from Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.
On a good day I can still walk a kilometer and stand for 5 minutes without feeling dizzy.
In front of a camera, I’m even able to perform at my best for a short time. Especially when I’m at home.
On a bad day I can’t move, lie in bed in a darkened room. Talking and noises hurt me. Everything costs me energy.
Not only work, but also chatting with friends exhausts me and I regenerate not in sleep.
I’m not tired, I’m seriously ill.
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https://24hoursworlds.com/entertainment/238766

(original german version in stern.de but you need to register)
 
Seems like Kleinschnitz is trying his best to be a German Wessely and doing a huge media offensive, with all the same insults and tropes about activists, anti-psychiatry and everything. Even brought in Sharpe. Even doing the traditional insulting people to get them angry and quote their anger as evidence they are just nasty activists.

At least going all in like they are will eventually be the end of psychosomatic ideology. But wow is it awful to notice how much pseudoscience still goes all too easily in medicine. This profession needs a through top-to-bottom clean-up.
Very good and differentiated article on the potential causes of Long-COVID in today's SZ. Among others with our psychosomatics expert Prof. Martin Teufel from UK Essen, with whom we also carried out our joint study.
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What he does is just despicable. He's pandering towards the yellow press and brags about publications in MSM (instead of journals) on Twitter.

I genuinely think he should get a PR person (if he'll establish himself as a psych LC expert long term) because his tweeting just seems very odd.
 
Prof. Dr. Scheibenbogen will receive the Order of Merit of the Federal Republic of Germany. She has been campaigning for the interests of those with ME/CFS for over 10 years. It’s a big deal.

Official announcement (machine translated):
"Chronic Fatigue Syndrome is a disease that has a particularly severe impact on the quality of life of those affected. Carmen Scheibenbogen does everything she can to help these people and is - as one of the very few in Germany - specialized in its research and treatment. She heads the Immunodeficiency Outpatient Clinic and the Fatigue Center at Charité Berlin. Right after the beginning of the Corona pandemic, when the cases of long and post-covoid illnesses rose rapidly, she devoted herself intensively to this clinical picture. The fact that the associated ailments became known to experts and the public as early as the summer of 2020 is due in particular to her. With her great expertise, she has since been fighting institutions, politicians and the pharmaceutical industry to increase research funding so that remedies quickly become a reality."
https://www.bundespraesident.de/Sha...meier/2022/09/220930-Verdienstorden-TdDE.html
 
This discussion is being shared a lot, keep seeing different accounts with excerpts.
“Currently there are only two outpatient clinics in Berlin and Munich for those affected by #MECFS . That is not enough. Research must also be pushed forward under high pressure.” These are the demands of Peter Pollakowski from BAHN-BKK #expertendialogMECFS @BKK_VBU @Siemens_BKK
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A follow-up documentary, due for TV screening on Oct 17th in Germany I understand. Link was posted on closed social media. Seems to be a follow-up documentary, but I would highlight the interaction between a doctor/patient and FND neurologist from 32:20. A GP that treated her own long COVID (worsened by vaccine) by removing autoantibodies, with dramatic symptom relief within 3 days and subsequent full recovery. To her face, the neurologist says that this was psychological and placebo.

https://rumble.com/v1kzjhz-h.e.l.p.-apheresis-for-long-covid-and-mecfs-documentation.html
 
Tagesschau, 17.10.2022

The Tagesschau website (German national and international television news service produced on behalf of the public-service television network ARD) on a documentary about Long Covid and HELP apharesis:

Long Covid: Fragwürdige Blutwäsche-Therapie
https://www.tagesschau.de/wissen/gesundheit/long-covid-blutwaesche-101.html

Goolge Tranlsate:


Long Covid -- Questionable blood washing therapy


Long-Covid patients often stray from doctor to doctor because they cannot find a cure. An ARD documentary by Eckart von Hirschhausen now presents blood washing as a promising therapy. Critics believe that there is no evidence for this. They warn against profiteering.

[..]

The film really gives me a stomach ache," says Carmen Scheibenbogen, head of the immune deficiency outpatient clinic at the Berlin Charité. She is interviewed in the film as a scientist researching Chronic Fatigue Syndrome (ME/CFS). She says: "I'm concerned that the film will lead to many patients in their desperation taking money into their hands and having HELP apheresis done. A market has developed there."
 
So, this is happening. :wtf:

I love to be discussed by people who know nothing about me and debate over whether my existence is real or not. Love it.

Great developments in Germany in the „sick - health care“ system - the Neurologists Association headlines an event announcement about #LongCovid and #MEcfs (CFS) with "Fact or Fiction"
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Reporting of what we're all familiar with. I wouldn't be surprised if this case was recorded as having recovered anyway.

"I've been in a wheelchair since the long Covid rehab"
URL: https://www.focus.de/gesundheit/new...ich-im-rollstuhl_id_166603521.html#/base-data
Translated: https://www-focus-de.translate.goog...tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en#/base-data

Even experts often do not seem to be aware that incorrect "activation" in patients with long-Covid can backfire. An affected person reports how he is now in a wheelchair after rehabilitation in the clinic.

...

Today I know: only some of the long-Covid patients suffer from chronic fatigue syndrome, also known as ME/CFS, like me. And it is precisely this part that must be careful not to strain itself too much. Therapeutic measures that help others can otherwise backfire completely. I call that a red line not to be crossed.

Unfortunately, this knowledge came too late for me. I crossed the red line several times in this clinic and when not only I but also the therapists began to recognize this, the child had, so to speak, fallen into the well.

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