News from Germany

strategist said:
What the fuck.
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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.
 
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chrisb said:
@Philipp I am relieved that I did not offend all my German friends.
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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.
 
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Philipp said:
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).
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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.
 
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Joh said:
much worse in eastern Europe
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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.
 
Joh said:
In the answer the governement says that the "Ärztekammern" are responsible. (Don't know the right English term for Ärztekammer – every state in Germany has its own local medical authority).

This is what the Ärztekammer in my state wrote about CFS in 1993:


Source: http://arnold-hilgers.com/wp/wp-content/uploads/2010/06/Hilgers-Info-1993-06-17-Schreiben-Ärztekammer-Nordrhein-zum-gescheiterten-Versuch-CFS-wissenschaftlich-zu-entkräften.pdf

I know, it was 1993, but they haven't changed at all. Until 2014 they had a guideline on CFS online, that was worse than the guideline tiredness (including the usual stuff about no testing, not giving the diagnosis and something about how we're just overwhelmed with city life). They still write BPS-stuff about CFS when contacted.

These are the guys that the government sees in charge of our life. It's enough to drive one to despair.
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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.
 
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Philipp said:
Human Heredity Theory and Racial Hygiene (1936)
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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:

Bei keiner anderen Gruppe von Krankheiten steht die Erblichkeit so im Vordergrunde der Ursachen wie bei den Seelenstörungen; zugleich aber begegnet die Erforschung des Erbganges im einzelnen bei keiner anderen gleich großen Schwierigkeiten. Schon über die Abgrenzung und Einteilung der erblichen Seelenstörungen herrscht bisher keine rechte Übereinstimmung unter den Fachleuten. Kein Wunder daher, daß fast bei keiner einzigen der Erbgang bisher ganz sichergestellt werden konnte. Sicher ist nur, daß die Erblichkeit alle anderen Ursachen an Bedeutung übertrifft.
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Here's a translation, with some help by Google.

In no other group of diseases is the heritability in the foreground of the causes as in the mental illnesses; At the same time, however, the study of inheritance encounters greater difficulties than with any other illness. Even the delimitation and classification of hereditary mental illness has so far been ruled out by the experts. No wonder, then, that almost none of them has been able to ensure their heritability. What is certain is that heredity is more important than all other causes.
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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.

Neurasthenia or nervousness consists of abnormally severe mental fatigue and related abnormal irritability. Since it is a mental anomaly, the term psychasthenia (after Janet) would actually be more appropriate. In contrast to mental weakness, referred to as feeble mindedness, psychasthenia is a mental weakness of a very different kind. Mental activity is on average rather increased, but endurance is low. Usually a distinction is made between a constitutionally conditioned nervousness and a neurasthenia acquired by overexertion; but in both cases, idiotypic and parakinetic causes certainly work together. If nervous exhaustion is already induced by the ordinary efforts of professional life, then of course the hereditary system is practically more important, if only by extraordinarily exhausting efforts and worries, these external causes. The hereditary attachments to psychasthenia can certainly be quite different in nature. Thus, an unusually strong mental activity, an excessively uninhibited course of ideas, can easily lead to emotional exhaustion, most easily with weak physique. Therefore psychasthenics often show asthenic constitution; but there are also psychasthenics of robust physique.
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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.
 
lycaena said:
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.
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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.
 
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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.
Sehr geehrte Bundesregierung,
sehr geehrte Frau Bundeskanzlerin Dr. Merkel,
sehr geehrter Herr Gesundheitsminister Jens Spahn,

vor wenigen Tagen hat die Bundesregierung eine Antwort auf die "Kleine Anfrage" vom BÜNDNIS 90/DIE GRÜNEN (Drucksache19/12204) zur Situation rund um die Situation der an Myalgischer Enzephalomyelitis erkrankten Menschen in Deutschland veröffentlicht. Die Antworten der Bundesregierung bestehen daraus, die Verantwortung anderen Institutionen zuzuordnen, wie auch aus fehlerhafter Argumentation und, statt auf die eigentliche Fragen zu antworten, werden die vorgegebenen Vorgehensweisen, also die Theorie, erläutert.

Schon Anfang diesen Jahres schrieb ich einen offenen Brief an Herrn Spahn mit der Forderung, sich mit der fatalen Situation zu befassen, der ME-Patienten ausgesetzt sind. Darüber erschienen deutschlandweit Artikel, zudem wurde Herr Spahn darauf von einem Partei- und Bundestagskollegen darauf hingewiesen. Bis heute gab es keine Reaktion.

Dass ME seit 50 Jahren von der WHO unter den Erkrankungen des zentralen Nervensystems verschlüsselt ist, und obwohl Deutschland einen Vertrag mit der WHO hat, hält dies die Bundesregierung, Behörden und Institutionen in Deutschland nicht davon ab, ME als eine Erkrankung der Psyche einzuordnen, gleichzeitig die Existenz der eigentlichen Erkrankung anzuzweifeln und dementsprechend Leitlinien zu erstellen und Anfragen zu beantworten.

Laut Bundesregierung ist die Diagnose ein Problem, bedingt durch fehlende abgesicherte, einheitliche und verbindliche Diagnosekriterien. Zudem existiere kein verlässlicher Labortest. Fakt ist: solche Diagnosekriterien existieren. Ein definitiver Test, sprich einen Marker, gibt es wirklich (noch) nicht. Aber den gibt es auch bei einigen anderen Erkrankungen nicht (z.B. MS und Alzheimer), trotzdem bestreitet niemand deren Existenz oder nimmt dies zum Anlass und als Rechtfertigung, den Patienten keine angemessene medizinische Versorgung zukommen zu lassen.
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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!:)
 
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
 
Joh said:
Thanks for your interest! :)

The situation is difficult. When I was in the Charité, they told me that Germany is 10 years behind the UK, but it rather feels like 30.

The community is small b/c people just don't get diagnosed with ME (so don't know they have it). Thus the patient organizations are also tiny.

We have the same BPS-problems like all countries (children are taken from families etc. – Nigel Speight compared one case of a German girl to Karina Hansen) but the BPS theories really can flourish b/c we don't have a broad opposition like e.g. in the UK. As an example, no German scientist or doctor has signed David Tuller's open letters so far.


Yep, there is the Deutsche Gesellschaft (German Association) and also the Lost Voices Foundation and #MillionsMissing Germany. They all cooperate and all do amazing work in my opinion. But they are run by dedicated volunteers and don't have the resources (yet) like NGOs in other countries. But the community is slowly growing and I'm hopeful. :)

The biggest organization in Germany (1600 members), Fatigatio, the only one that has some resources and some paid staff, is in my personal opinion like Action for ME but much more unprofessional, incompetent and ineffective...

Here's an overview of the German NGOs in English: https://me-pedia.org/wiki/Category:German_patient_groups
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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. .?
 
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