News from Germany

What the fuck.

 

That's frightening. Was denazification effective in that state?

EDIT the problem with problems is that thy call for a solution.

 

It is actually not that surprising. They never felt the need to hide their intentions or embellish the situation much since there was never any danger of them coming under scrutiny.

It is actually perfect that you bring that up, @chrisb - no, it was not. The Ärztekammer Nordrhein is known as one of the primary... sanctuaries for the former SS members. In my opinion, that still shows (e.g. in the excerpt Joh posted) and has been effectively creating a 'corporate culture' that is still active. They are particularly bad, but it is not necessarily that much worse than in some other states, and we have a very famous chairman of the Bundesärztekammer that was defended almost to the bitter end to support that claim.

The BPS ideology does not just have some loose connections to classic NS ideology in my personal opinion. Someone told me that e.g. comparing Human Heredity Theory and Racial Hygiene (1936) to some of the 'expert statements' that have started cropping up in the 90s linking CFS/hysteria/neurasthenia, some excerpts are apparently almost the same with regards to their content (I cannot read entire books anymore, much less do genuine intellectual work, so if anyone wants to work this stuff out with more diligence please do go ahead). I do think it is fair to lump them all together since the guy who writes books on how to handle cases for the DRV basically just translates Wessely most of the time. The train of thought is the same. The strategies are the same.

There is no scientific discussion that would endanger the psychosomatic ideologic movement here. People from other fields just think that psychiatry would notice a fuckup of that magnitude and don't think their colleagues could possibly be that incompetent, and people from inside the field do not have any real ability to change what some citation circles want to think. If someone wants to present themselves as an expert on ME it is very simple - no one is an expert on ME due to a lack of research, therefore the people who present themselves as such by definition must be fooling themselves. We do have vacancies for these positions though since there are many very ill people to handle and this subsequently naturally attracts psychopaths and idiots. Science is only self-correcting if you are actually doing science. If we have learned anything from the whole ordeal over the last century it is that circlejerking with poor methodology will not be noticed by people who are too incompetent to realize what poor methodology actually looks like. There is monetary (and misanthropic) incentive to make us go away, but there is little to gain financially for institutions by supporting us in a less... homicidal manner.

Of course, it would be very much possible to be an expert on ME as far as the science goes today and simply state what we know, what we don't and what is to be expected - but the people who are able to do this in a coherent manner are few and there are really more interesting things to spend a career on.

 

@Philipp I am relieved that I did not offend all my German friends.

 

Not at all, far from it actually. I sometimes do question myself if I am seeing things that I want to see. I am actually pretty happy that it really is that blatantly obvious a thought

There is nuance to all this, of course.
I am regularly appaled by how many people genuinely react to my situation when I describe what PEM actually feels like and what my life is limited to with 'oh my gawd, you poor guy... that means you are not working? Isn't there any job you can do? You see, I don't really care about any of those symptoms as that would require a modicum of empathy and basic human decency. I do, however, use my work to keep me busy from the screaming emptiness that is tearing my apart whenever I have a second to myself, so let me take this opportunity to project all my fear onto you and pretend that I want to help you by aggressively misunderstanding everything you just told me and attributing to you a sort of moral failure due to your lack of employment'. None of those people have been brought up hearing sentences like Arbeit macht frei on a daily basis or anything, anything that sounds remotely... too German I guess? is met with instant objection by those very same people.

It is all too easy to not get scrutinized for emphasizing getting people back to work when our entire work culture is permeated by this kind of oversimplified thinking, and in part due to not really coming to terms with WW2 (thus rejecting stuff that feels 'very German!') our work culture is, for the most part, our culture.
If you do not realize that forcing wrong treatment on sick people can be damaging to them and automatically assume that the health care system would not ever do anything to hurt people (it is called HEALTH care, see) no one ever assumes there is anything to scrutinize.

It then becomes a very fine line between well-meaning doctors actually wanting to help you (which ideally would include returning to something that most people would call work, I am bored out of my mind even more than I am in pain) who may evaluate the efficacy of treatments the wrong way, maybe even for the reason of really wanting to pull patients out of dire situations - and people who actually genuinely just want you to not exist as a sick person anymore because they feel offended by the fact that you get to live on without putting in the hours they have to put in every day, no matter what that might mean.

But I digress.

 

Interesting. I had the feeling there might be a certain ideological closeness. The policy on ME is basically discredit patients, prevent them accessing support and help, and let them die from neglect. There seems to be strong ideological basis to this.

As far as I know, eugenic laws in Nazi Germany targeted at first people with neurological and psychiatric disorders, with forced sterilization. Then they moved on to other groups and harsher measures but we all know that part.

 

Definitely worse. We literally have nothing. I was lucky that one doctor told me that I probably have 'CFS' and it's not a psychiatric disease, but at the same time, was also told that psychiatrists usually 'take care' of these patients, which basically means that psychiatrists are very happy to diagnose whatever is on the menu that day and give you all kinds of pills to play with. If that doesn't work, you can be admitted (with your own permission) to psych ward. I don't even want to know what happens there.

 

There was a controversial doctor at this time in
North Rhine Westphalia who offered expensive tests and unproven treatments for ME. This probably didn't help the cause.
Nevertheless it's awful what the Ärztekammer wrote.

 

I'm reading through parts of that book now (not sure which edition).

I have now arrived at the section dealing with mental disorders. There is this paragraph which seems revealing:

Here's a translation, with some help by Google.

So they say that heritability for mental illness hasn't really been demonstrated, but is surely the most important cause. A bit of a contradiction here.

There's a bit about hysteria, which is interesting as it's described as subconscious imitation of an illness to achieve a goal.

Moving on to neurasthenia, which according to some is the older term for CFS.

It doesn't say much but seems to describe it mainly as state of physical fatigueability (with high mental activity). Later they say that hysteria and neurasthenia are closely related to each other. They also write that neurasthenia is twice as common in men than in women. They seem to be describing something closer to burnout than a CFS-like syndrome.

Oh and homosexuality is considered "markedly pathological" by the authors and mentioned in the chapter on mental illness.

 

Yes. I still haven't made up my mind about this guy (like about many "ME experts") and it's hard for me to judge in the context of the early 90ies. After all there is hardly any evidence base for treatment (less so in the 90ies I guess) and it's easy to criticize doctors who are trying to help. From what I read, he did immune testing and prescribed stuff like immunoglobulins. That was of course much much expensive for insurances than sending people to psychotherapy and they protested.

A court in Düsseldorf ruled that an insurance had to pay his experimental treatments because there was no standard treatment for pwME (and the court used the term "systemic failure"). From what I read, what he prescribed is not uncommon today, the Charité does a trial on immunglobulins and he also prescribed antihistamines and infusions (and did exercise testing?). (Yes, I know that patients in the end were unhappy about other stuff too and he became private and even more expensive in the 2000s or 2010s and started doing tests in obscure private labs etc. But I also read from many patients who feel they got their lives back.)

I'm quite sad actually, because his practice was very close to where my parents lived for over 10 years of my illness (but I wasn't diagnosed yet). I would have preferred to try his treatments over 3 psych clinics, being drugged with max dose antidepressants (without being depressed) so I couldn't think straight for 7 years and being send to weekly therapy to work an my "illness gains".

I get that the Ärztekammer wanted to get rid of him (and maybe rightly so?), but their strategy was to erase a whole illness. (And as far as I know they didn't succeed – so they couldn't find enough against him? No idea.) Also their alternative was to send people to psychotherapy. And the Ärztekammer hasn't stopped its work against ME, although he's long gone.

 

What was the therapy like? Do they try to convince you that you're sick because you're gaining so much from it?

 

I was pointed towards this open letter. I'll leave it to those German speaking members to determine how the value of it, although from using Facebook translate it looks to be a reasonable letter.

Continued at

Code:

https://www.facebook.com/melanie.schickedanz/posts/10215184549067739

 

Quick translate:

I think the post above has one but it's a Facebook embed and I can't see those.

Dear Federal Government ,
Dear Federal Chancellor Merkel,
dear Minister of Health Jens Spahn ,

a few days ago, the Federal Government has published a response to the "Small Request" from Alliance 90 / The Greens (printed matter19 / 12204) on the situation around the situation of people with myalgic encephalomyelitis in Germany. The answers of the Federal Government consist of assigning the responsibility to other institutions, as well as of erroneous reasoning and, instead of answering the actual questions, the given procedures, ie the theory, are explained.

Earlier this year, I wrote an open letter to Mr. Spahn demanding that we address the fatal situation facing ME patients. In addition, articles appeared throughout Germany, moreover, Mr. Spahn was pointed out by a party and Bundestag colleague. Until today there was no reaction.

That ME has been coded by the WHO for the past 50 years for diseases of the central nervous system, and although Germany has a contract with the WHO, this does not prevent the federal government, authorities and institutions in Germany from classifying ME as a disease of the psyche to question the existence of the actual disease and to provide guidelines and to answer inquiries accordingly.

According to the federal government, the diagnosis is a problem due to the lack of secure, consistent and binding diagnostic criteria. In addition, there is no reliable laboratory test. Fact is: such diagnostic criteria exist. A definitive test, ie a marker, really does not exist (yet). But this is not the case with some other illnesses (eg MS and Alzheimer's), but no one denies their existence or takes this as a reason and as a justification, to provide the patient with adequate medical care.

 

I am so sorry you have such an awful situation in Germany.
My heart goes out to you.

I wrote a post about the situation and the recent events described in this thread in a Swedish ME-group on FB. People responded with outrage and sympathy, and I hope you can feel the massive wave of compassion through cyperspace.

Shortly thereafter I was approached by the Swedish author Karin Alvtegen, who has ME. She is the subject of a book about ME - "Invisibly Ill - as life passes", mentioned here: https://www.s4me.info/threads/news-from-scandinavia.647/page-26#post-154851,


Karin is also an ambassador for OMF since a few months, doing an amazing job I might add.

She is hoping to get in contact with someone from a German patient organisation regarding the book "Invisibly Ill".
The book is being translated into English and the publishers, Brombergs förlag,
https://www.brombergs.se/about-us/,
are looking to find publishers in other countries.

The book has had a huge impact on raising awareness and increasing knowledge here in Sweden, not just among friends and family but also clinicians and health care personnel.

There's continous reports of familymembers saying they finally understand the disease after reading it, or doctors reevaluating their position. One person said her GP pivoted completely after having read the book and some additional information, and even stated that he now believed it was a real disease and an interesting one!!!

Karin used to be very popular in Germany, back when she was still able to write books. (Also her great aunt was Astrid Lindgren, who apparently is much loved there).

Because of this she figured the book could do some good there, and I agree with her.


Since I don't have that kind of contacts I told her I would ask around here.

So I need your help finding someone that Karin and her publishers can get in contact with regarding this so I can relay that information to her!!

I appreciate your help with this immensely, as do Karin!

 

Well, @Joh has already posted here so will be getting notifications already, but I'll tag her as the person I know involved with the German patient organisations.

 

Great! Thank you @Andy !

 

Looking at the reasons given for low diagnosis and awareness of patients regarding what they have, it seems the global community should maybe fundraise to raise awareness in countries where there is low awareness, medical denial and language barrier access to information on the web. It’s in all our interests to have an informed, connected and active global community

If people could travel around various busy cities regularly with information and awareness material and then perhaps adverts placed in media, along with links to a website with clear key resources in German would that help?

I don’t know if OMF included Germany in their recent ‘tour”, they went to Denmark.

If it’s consolation uk isn’t that different in the respect Of the medical profession seen as a self regulating, expert elite outside the interference of lesser mortals like MPs etc without medical expertise. When I have written to our department of health in the past I was told NICE were independent and therefore outside government reach , as were the MRC who were not only independent but scientist experts. I was delighted to see quite a senior mp at one of our debates saying medicine can get it wrong and close ranks too etc but she didnt really pursue with this unfortunately, which shows how difficult it is to take thd medical establishment on. I think that ultImately getting fearless less deferential journalists on side is the way and going for change that way. We know that eg with stomach ulcers there was huge resistance to changing accepted wisdom and that seems evident in our situation to those prepared to consider with dire consequences

 

Obviously there’s a massive reach & awareness & fundraising problem in Germany if you are saying your largest patient organization has 1600 members and yet there’s overall population of 80 m. I thought that it was low in uk where 2 major charities combined have 15000 from a 65m population. I hope that ##MM Germany can help and perhaps some central resources be given to Germany to help relieve a catch 22 of low involved patients/low income.

I wonder if there’s a way to try to catch those who might be diagnosed despression but uncomfortable and puzzling with that so google for alternative diagnosis, by targeting them with a website that would come up if you google ME type symptoms in German. .?

 

https://twitter.com/user/status/1169401789332041728

 

https://twitter.com/user/status/1170647083482849280