Hoopoe
Senior Member (Voting Rights)
This is what the Ärztekammer in my state wrote about CFS in 1993:
What the fuck.
This is what the Ärztekammer in my state wrote about CFS in 1993:
What the fuck.
@Philipp I am relieved that I did not offend all my German friends.
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).
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.much worse in eastern Europe
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.
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.
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.
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.
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.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.
weekly therapy to work an my "illness gains"
Continued atSehr 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.
https://www.facebook.com/melanie.schickedanz/posts/10215184549067739
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.She is hoping to get in contact with someone from a German patient organisation regarding the book "Invisibly Ill".
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