News from Germany

rvallee · Feb 7, 2022

Twitter account says: "We are the largest community for medical professionals in Europe. Exchange ideas with colleagues & read medical news with word jokes every day." 2 comments and they are supportive.

ME/CFS: In the limelight thanks to Corona
Chronic Fatigue Syndrome is increasingly becoming the focus of medical professionals because of Long Covid. But what are the similarities and what are the differences?

https://www.doccheck.com/de/detail/articles/37233-me-cfs-dank-corona-im-rampenlicht

Joh · Feb 24, 2022

Joh said: ↑

ME/CFS is now officially for the first time part of the coalition agreement. The government writes: "We are creating a nationwide network of competence centers and interdisciplinary outpatient clinics to further research and ensure care for the long-term consequences of Covid19 and for chronic fatigue syndrome (ME/CFS)"
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The German ME/CFS Association and Long COVID Germany have submitted a "National Action Plan on ME/CFS and Post-COVID Syndrome" to the Federal Government. The aim of the action plan is to implement the measures mentioned in the coalition agreement and other necessary measures with urgency.

The action plan is supported by a list of doctors and scientists. The plan recommends concrete measures and proposes a budget of 130 million euros for 24 months.

Content
Why Germany needs an action plan for ME/CFS and post-COVID syndrome
1. central coordination office and task force
2. targeted funding to develop biomedical therapies
2.1 Basic research
2.2 Therapeutic research
2.3 Diagnostic research
2.4 Health services research
3. a national competence network for the diagnosis and treatment of post-infectious syndromal diseases
4. information campaign
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Info: https://www.mecfs.de/aktionsplan/
Automatic translation: https://www-mecfs-de.translate.goog/aktionsplan/?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

https://twitter.com/user/status/1496769382001025025

Hutan · Feb 24, 2022

Fantastic to see that coordinated approach @Joh.

What do you think are the chances of this effort bearing fruit?

NelliePledge · Feb 24, 2022

Best wishes for success with this.

Hutan · Mar 15, 2022

Preprint: Prevalence, determinants, and impact on general health and working capacity of PASC 6-12 m after infection..., 2022, Peter, Kern et al
Epidemiological study of Long Covid in Germany, of a good size - PEM not yet used as a symptom.

TiredSam · Mar 16, 2022

For anyone who understands German, I've just been listening to this podcast:

https://www.deutschlandfunkkultur.de/marina-weisband-chronic-fatigue-syndrom-100.html

Only half-way through, but it seems excellent so far. A famous political person in Germany who's had ME for 2 years.

Jaybee00 · Mar 30, 2022

Merged thread [New German ME/CFS Research foundation]

https://forums.phoenixrising.me/threads/me-cfs-research-foundation.87386/

Congrats Martin!

Trish · Mar 29, 2022

I can't see anything on that flyer about how the organisation will be structured, trustees, scientific advisory board, whether it will have salaried employees etc, yet they seem to be asking for money already. I guess they have a website with that information - can anyone link it please.

CRG · Mar 29, 2022

https://www.firmenwissen.com/en/az/...2034173/ME_CFS_RESEARCH_FOUNDATION_GGMBH.html

"ME/CFS Research Foundation gGmbH has its registered office in Hamburg, Germany. Its current status is listed as active. The company is registered at the Trade register at the local court of Hamburg with the legal form of Private limited company (number HRB 174036). The Trade register entry was last updated on Mar 4, 2022. One director currently runs the company: 1 manager. The company reports contain information on the company's ownership structure and its shareholder. The company has one location. The company report was last updated on Mar 15, 2022.

New register announcement from Mar 4, 2022: ME/CFS Research Foundation gGmbH, Hamburg, Ballindamm 27, 20095 Hamburg. 02.02.2022. G ..."

Hutan · Apr 5, 2022

Prof. Karl Lauterbach, Federal Minister of Health for Germany on Long Covid

Kalliope said: ↑

refers on twitter to a paywalled article about Long Covid with the following comment (translated):

Unfortunately it is exactly like that, worth reading article in @SZ In a few years we will see full extent #LongCovid . Now everyone should try to avoid infection. Even if the course is mild, there is a risk that life will change. Nobody likes to hear it, but that's the way it is
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Long Covid in the media and social media 2022

MSEsperanza · Apr 12, 2022

Very long article in a major German weekly newspaper.

Warning: Contains insinuation of reaching out for possibilities of assisted suicide

Long Covid: Kolja will nicht sterben, er will sein Leben zurück | Zeit Am Wochenende 15/22 / ZEIT ONLINE / updated on 7. April 2022,
https://www.zeit.de/gesellschaft/20...amilie-bundesregierung-bc-007/komplettansicht

By Viktoria Morasch, Thomas Pirot

(Similarities with ME/ CFS explicitely mentioned. Google translate dosn't work with the Zeit website -- so here just some parts of the very long article translated by deepl: )

Long Covid: Kolja doesn't want to die, he wants his life back | ZEIT ONLINE (weekend edition, updated on 07.04.2022)

Kolja Wortmann lies in his bed and tries not to move. Every day, the whole day. To his right is a box of medication, to his left a coat rack. A vial is attached to it, an infusion tube hangs down. A few months ago, Kolja Wortmann would sit down on the floor of the shower cubicle every now and then and let water trickle on him, just to feel a change. Today, every drop of water is one sensory stimulus too many.

Kolja Wortmann is 32, his hair is shaved short. Behind the drawn curtain are blinds that half-cover the window, and behind them is a world Wortmann barely knows. [...]

Wortmann has Long Covid. He can barely tolerate sound and light, has headaches, tinnitus, a burning sensation throughout his body. He has trouble concentrating and can't rest at night. His hands often feel like they are paralyzed. His energy is enough for a few minutes of talking a day, for two steps: from the bathroom door to the toilet and back. There, his mother waits with the wheelchair. If Wortmann goes beyond his limits, he takes revenge: Crash, everything gets worse. A roaring in the head, a polyphonic tinnitus, an exhaustion that sometimes makes him wish for death.
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Every Covid 19 wave takes some with it. They die. Others get well. And still others simply remain, like Wortmann. [...]

The Wortmanns and other sufferers say what torments them most, besides the disease, is how helpless they feel. Left alone, "like a blind spot on the map," says Sophie Wortmann, the mother.[...]

It has to do with a drug: BC007. It is the only one in the world that has cured Long Covid patients; a team of doctors in Erlangen discovered it. Four people got significantly better after treatment with BC007. Four out of hundreds of thousands who, like Kolja Wortmann, continue to wait for it. But the money for a large-scale study is lacking. The Wortmanns' disappointment also has to do with a list that their father meticulously keeps: So far, there are more than 50 contacts to doctors, professors, therapists and alternative practitioners on it. Most of them lack knowledge about Long Covid, he says. The few experts are far away and overloaded.
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January 2021: Kolja Wortmann has been sick for three months. [...] On the Charité website, he comes across a list of criteria for ME/CFS, chronic fatigue syndrome. A severe neuroimmunological disease that has little to do with what most people understand by exhaustion. Sleep disturbances, pain, dizziness, cold hands and feet - Wortmann can tick 28 of 38 boxes.

His mother writes an e-mail to the Charité. The answer: Her son does not have ME/CFS, his symptoms will probably disappear on their own. [...] It is only later that the Wortmanns understand: one only speaks of ME/CFS when the symptoms last longer than six months. Guidelines - the family will still have a lot to do with them.
[...]
About 300,000 people in Germany have ME/CFS, mostly as a result of a viral infection. According to Charité estimates, tens of thousands after Corona.
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Doctors follow guidelines, protecting them from wrong decisions and legal consequences. One drug helps some sufferers, at least against the pain and the nervousness at night. The Charité recommends it, but the doctor in his hometown won't prescribe it to Kolja Wortmann because it's for drug addicts in withdrawal - guidelines.
[...]
A special blood wash has helped several sufferers; Paul Wortmann tries the transfusion department of a hospital. They are not used to such direct contact - "Why don't you have anyone to refer them?". Because there is no one.

Sophie and Paul Wortmann have to hear that their son has a disease of affluence, that he takes up time that is needed for real patients. They are called helicopter parents. When they contradict, they are told: "Do you want to doubt my reputation?"
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Kolja Wortmann doesn't want to die, he wants his life back. As soon as he feels just a little better, "he's there like a rocket," his mother says. But that's wrong. He has to be careful. After the first glutathione infusion, for example, he feels better for a short time. He tries free sitting, five minutes, three times a day - crash.
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Those who suffer from ME/CFS and cannot call it Long Covid because another virus has triggered the disease often only receive financial support after a diagnosis has been ruled out. From one of the chat groups, Sophie Wortmann knows a 25-year-old who is unable to work and lives on Hartz IV. She needs a walker because she keeps falling over. The public health officer said she was healthy and should do sports. No need, no rollator [...]

The Wortmanns [...] They've already spent about 30,000 euros on it [fighting against the illness] this year alone. And they have been granted care level III. By phone from a man who happened to read an article about Long Covid in the newspaper the day before, he said. Luckily, that happens, too.
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March 2021: [...] Wortmann has a goal he is working toward. He wants to manage to walk up and down the street in front of his house once with his girlfriend and her dog. He trains - and exaggerates. Crash.
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August 2021: Paul Wortmann drives his son to Kempten for a blood wash. They have already been there a few times. The blood washing does not provide lasting help, but alleviates some of the symptoms at least until the next day. Each treatment costs 1,500 euros, which the Wortmanns pay themselves.
[...]
September 2021: Kolja Wortmann arrives at the Klinik am Steigerwald [a TCM clinic]. It is the only facility that accepts a serious case like him. The parents pay for it, more than 25,000 euros.
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Erlangen - the city in Middle Franconia means hope. There, in the summer of 2021, the world's first Long Covid patient was cured. [...]

A team of doctors in Erlangen noticed that the eyes of patients who survived Covid-19 still had poor blood supply many months later. It stood to reason that the same was true of the rest of the body. To correct the blood flow problem, doctors used a drug for a specific form of heart muscle weakness: BC007. It worked. But the drug must first be approved. [...]
Kolja Wortmann takes part in a test in Erlangen. The doctors examine his eyes [...] a crash follows. But there is also hope: in a few weeks, a study on BC007 is to start. Thirty people will be allowed to participate, ten of them will receive a placebo.

Since then: nothing. Wortmann's father keeps calling Erlangen. A professor at the university hospital there tells him that he is inundated with videos of crying patients waiting for BC007. Meanwhile, thousands have applied for the study. But not even the doctors in Erlangen have received the drug, confirms Peter Göttel of the manufacturing company Berlin Cures.

Göttel puts the hopes of those affected into perspective: For BC007 to be approved, there has to be a much larger study than the one planned in Erlangen. With a five-digit number of patients. That would take three to four years and cost about 30 million. "It would take someone with the courage to put their money where their mouth is," says Göttel. But no one from the big investors has contacted his company, he says, and the public sector apparently doesn't want to invest nearly as much as it does for vaccines.
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One last hope
[...]February 2022: Kolja Wortmann tries to lie still for 19 hours a day. He wants to accumulate energy, because he has something in mind, a last hope.

Because he will not get BC007 in the foreseeable future, the Erlangen doctors have suggested another type of blood washing. It is supposed to filter out the autoantibodies, a so-called immune adsorption. There are no studies yet, but at least it is an approved procedure.

Wortmann is admitted to the University Hospital in Würzburg as an inpatient. He is happy, but he is also afraid.

On February 10, he writes to his parents from the hospital: "The doctor assumes I'm chilling in bed all day and watching Netflix. Get the exact treatment here that is destroying me. I am not believed and they talk about depression. The problem is, I can't move and I can't talk. How am I supposed to communicate here?" And, "I crash. That was the chance, the one. Now there is no more."[...]
The neurologist has performed the lumbar puncture, sent Wortmann through an MRI, and told him to stand. He says that he thinks the arranged blood washing is bullshit. He also doesn't believe in BC007. Wortmann should go home and cure his depression, he says.

Since Kolja Wortmann has returned home, the blinds have been lowered even further. He says he sees no chance of coming to terms with the illness.

His parents continue to look for help. They are also looking for a doctor who can help their son die. But there, too, they get rejections: Kolja Wortmann might get better someday.
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(I think the journalist ist well-meaning and empathic but I'm afraid not only the mentioned doctors who seem to deny the existence of Long Covid as a postviral illness make me angry but I find also the way how the quoted and otherwise mentioned researchers promote unevidenced treatments very unhelpful.

It's not good if people encourage premature and very costly expectations regarding potential treatments among severely ill people and their families.)

rvallee · Apr 9, 2022

Possibly already known but just in case:

"The Medical Association (...) is trying to find experts who can scientifically refute the new disease CFS and refute the extremely expensive diagnosis and treatment methods.
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https://twitter.com/user/status/1512555532711870474

MSEsperanza · Apr 9, 2022

rvallee said: ↑

Possibly already known but just in case:
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This is from 1993.

Jonathan Edwards · Apr 9, 2022

I wondered who still used a typewriter.

rvallee · Apr 9, 2022

MSEsperanza said: ↑

This is from 1993.
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Yeah, I noticed. Doesn't make it any better, deliberate attempts at scientific sabotage by a medical association does not get better with time when the impacts are currently happening. This is why things are so broken right now, past failure becomes current failure.

The class action lawsuits will be huuuuuuuuuuuuuuuuuge.

MSEsperanza · Apr 12, 2022

rvallee said: ↑

Yeah, I noticed. Doesn't make it any better, deliberate attempts at scientific sabotage by a medical association does not get better with time when the impacts are currently happening
Click to expand...

Yes it's an appalling document as it shows the unwillingness of a regional medical association (*) to investigate further about the illness. They knew the answer before.

And yes, the prejudice that ME/CFS isn't an illness entity is still widespread among doctors in Germany.

The document also shows that there must have been some doctors who often applied likely unevidenced diagnosis procedures and unevidenced treatment in the early 1990s. It's not wrong to refute "extremely expensive diagnosis and treatment methods" if these are actually humbug.

And the latter I think is a still a big problem, too.

It's wrong to conclude from the fact that many patients feel taken seriously only by some doctors who offer them expensive humbug that those patients don't suffer from a genuine illness. It's bad to deny them a proper examination. It's also bad to deny that more biomedical research is needed to understand ME/CFS.

I'm afraid though that not only the psychosomatic-humbug-offering doctors but also the biomedical-humbug-offering doctors, even though I'm sure many of them are well-meaning, facilitate the perception of ME/CFS as a humbug diagnosis among their colleagues.

(*) The document is from the 'Ärztekammer Nordrhein', one of the 17 state chambers of physicians.

Edit: wording.

rvallee · Apr 21, 2022

Can't read most of it but it's pretty self-explanatory:

https://twitter.com/user/status/1517057535638970368

It's seriously unhinged for medicine to actually be comparable to flat Earthers at time, incapable of learning from experience. Completely absurd level of failure.

TiredSam · Apr 22, 2022

It's from a rehab clinic working on behalf of the German pension authorities. Before qualifying for a sickness or disability or work incapacity pension, you have to demonstrate that you've tried rehab, so you have to go to this place to stand a chance of stopping work early.

Their model is that if you cheerfully or determinedly push through and insist on continuing to run half marathons, you will make your long covid chronic. On the other hand if you avoid exerting yourself through fear, you will also make your long covid chronic.

The middle way to quickly reduce your symptoms is to do what the doctors tell you blah blah blah waffle waffle arseholes. Sorry but I just can't be bothered translating the middle bit, it's just vague waffle, worded so that you can be easily shunted into one of the two other categories if you stubbornly refuse to get better under the auspices of the good doctor.

TiredSam · Apr 22, 2022

Oh go on then, here's the middle bit:

Doctors' Advice:
Continue normal activities as much as possible
NO increased bed rest
Avoid extreme exertion, tailor your activities to your ability
Learn from short-term setbacks
Accept limitations temporarily

So you can see this waffle can mean anything to anyone, and with hindsight be interpreted to blame the patient of give credit to the doctor as desired.

TiredSam · Apr 22, 2022

TiredSam said: ↑

Learn from short-term setbacks
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What I have learnt from fellow ME sufferers in Germany who have been subjected to the temporary setback of being sent to this type of clinic, is that it's best to avoid all medical and other authorities as much as possible when it comes to ME, so I've basically been in hiding for the last 8 years, which I've been able to do because my ME is mild, I can still work a bit, and don't need to apply for benefits. Many ME sufferers in Germany aren't in such a lucky position, so they are thoroughly stuffed, and about to be joined by long-covid sufferers.

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