News from Germany

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

 

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.

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

 

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.

 

Merged thread [New German ME/CFS Research foundation]

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

Congrats Martin!

 

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 ..."

 

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)

(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.)

 

Possibly already known but just in case:

https://twitter.com/user/status/1512555532711870474

 

This is from 1993.

 

I wondered who still used a typewriter.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.