News from Germany

Just a tiny correction, it starts at 10 pm.

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After that, the documentation is available worldwide for 90 days on the Arte website. A trailer can already be viewed on the website: https://www.arte.tv/de/videos/096283-000-A/die-raetselhafte-krankheit-leben-mit-me-cfs/

 

ME / CFS - Symposium Fulda September 4th, 2021
The event will be broadcast live on YouTube. The participation link can be found on the Fatigatio eV homepage under "News" prior to the event. https://www.fatigatio.de/news

https://www.fatigatio.de/termine/detail/me-cfs-fachtagung-fulda-04-september-2021

https://translate.google.com/transl...g-fulda-04-september-2021&prev=search&pto=aue

 

Deutsche Gesellschaft für ME/CFS (22.07.2021) :

Open letter to neurological professional associations

July 22nd is World Brain Day. It was created by the World Federation of Neurology in 2014 to bring more attention to neurological diseases. The German Society for ME / CFS took the World Brain Day as an opportunity to contact the neurological professional associations in Germany. You will find the text of the open letter below.

https://translate.google.com/transl...ttps://www.mecfs.de/welttag-des-gehirns-2021/

 

Even in machine translation this reads very well. Though it perhaps overstates our physiological understanding of some symptoms, it is overall a very useful document.

 

I know this is not news but a question but anyway: A member in my group who lives in Germany needs some help and asked me to ask German pwME for info. A doctor referred her to a CFS centre in Berlin but there they rejected her because she didn't have a viral trigger (she had gradual onset two years ago and she didn't have any obvious trigger, it just started). She has been screened very thoroughly for other diseases, everything is fine and she would like to be accepted at that CFS centre in Berlin but she is stuck.

So the question: What other options does she have? (She would like to convince the centre to accept her.)
What are the closest good options for her if she wants to see a specialist? Are there any?
Is the Berlin ME/CFS centre worth it? Is it a place with decent understanding of the disease? (This last one is my question actually.)

Thank you!

Edit: I just realized: Is this Scheibenbogen's place?

 

My 13-part blog series on my trip to the Charite in Berlin:

https://forums.phoenixrising.me/blog-articles/blog/tiredsam.20476/

It is Scheibenbogen's place.

I personally decided that there was no other option than going to the Charite, if they hadn't seen me I wouldn't have gone anywhere else, or to any other doctors. I wanted a non-psych diagnosis from a credible institution, and I got one. They definitely have a decent understanding of the disease. They are an oasis in the desert that is Germany, where belief in the mysterious power of the mind and other forms of woo is rampant amongst doctors and patients. Since my diagnosis in 2016 I have gone back into hiding from the medical profession. I have heard of and looked into other places claiming to specialise in CFS, but they seem clueless and I wouldn't go to any of them. There are a few private doctors who are spoken very highly of in patient circles, they will charge a fortune for vitamin B injections and the like and have a wonderful bedside manner, the patients I know who've been to these doctors never seem to get any better in the long term.

As you may read in part 4 of my blog, I was a bit flexible in my answer about susceptibility to infections, and said my ME started with a viral infection, although I can't be sure it did. Perhaps your friend could suddenly remember the viral infection she had just before her ME started? The Charite won't be able to do much for her apart from give her a diagnosis and recommend pacing, but at least she'll have that instead of being psychologised. My report and treatment recommendations, and my opinion of them, are contained in part 9 of my blog onwards.

 

From part 7 of my blog (just reading it again for a trip down memory lane ...)

 

May I introduce two important links regarding ME/CSF:

Prof. Dr. Scheibenbogen. Berlin DNA-Markers for ME/CSF
Full article: https://www.frontiersin.org/articles/10.3389/fimmu.2020.00578/full

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Abstract: “Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful…”
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

On Monday I saw Neurologist number 5. As expected he had never heard of ME/CSF, but I came prepared with a printout of the same I posted here.

 

Mike has interviewed two pwME and the German Association for ME/CFS about the situation in Germany. Interviews in English and German.

Mike is running the marathon in Hamburg on 12 September. A huge thank you.

http://www.mikeseumarathons.eu/germany.html



https://twitter.com/user/status/1433009009204867080

 

One of the largest companies of compulsory statutory health insurance in Germany, the 'Techniker Krankenkasse' updated their information about ME/CFS. In their rubric 'treatments and medicine' / neurological limitations, they say:

(Translated with www.DeepL.com/Translator, free version)

ME/CFS: more than just exhaustion

Author: Salima Coy
Date of publication: 03.06.2021

https://www.tk.de/techniker/gesundh...ngen/me-cfs-mehr-als-nur-erschoepfung-2016418

Google translate link:

https://www.tk.de/techniker/gesundh...ngen/me-cfs-mehr-als-nur-erschoepfung-2016418

I think it's a huge a progress compared to an older version that I only vaguely remember.

It would be even better if they referenced what they say so that people themselves could have a look at the evidence.

But they don't do that for other diseases either. This is what they say about living with MS:

https://www.tk.de/techniker/gesundh...enkungen/leben-mit-multipler-sklerose-2098474

google translate link:

https://translate.google.com/transl...enkungen/leben-mit-multipler-sklerose-2098474

Edited to add a missing 'y' and to fix some issues with the layout.

 

I may have to move from the Barmer.

 

I think that piece is a brilliant brief summary which I would love all our UK GPs, consultants in fact all HCPs to read. I feel sure that would help them to improve their reaction to ME/CFS patients.

Thank you for sharing. Gave me a much appreciated and needed morale boost.

 

https://twitter.com/user/status/1438475257325793286

 

I'm no expert but making the information accurate and relevant seems like a more important priority than making it accessible. Not quite there yet, Cochrane.

 

I'm insured at TK. Not sure though how much of what they put out publicly will have any effect on their decision making, e.g. when it comes to granting therapies.

The first gatekeeper in all of this are our GPs and they in general aren't very open to reading anything a patient is handing over to them. So even if my own health insurance is recommending ruling out several other illnesses/going for expensive testing, I doubt that a "non believer" GP will follow that.

 

Somehow I don't think they have their eye on the ball. See, they do not fear a rehabilitation supply deficit, which is not even something relevant here. It's amazing how it's completely optional to pay attention to reality in health care, like looking at life through a straw.

https://twitter.com/user/status/1442986406817632257