(Auf Deutsch) German language blog on PACE Trial (Oct 31)

[Dolphin]

Melanie Schickedanz
Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt
Veröffentlicht: 31/10/2015 10:43 CET Aktualisiert: 31/10/2015 10:43 CET
http://www.huffingtonpost.de/melanie-schickedanz/wenn-wissenschaft-versagt_b_8406424.html

 

[TiredSam]

Thanks. That is a brilliant, and important, article.

My rough translation of the final paragraph:

Wie ein falsches Studienergebnis Schaden anrichtet
In den Medien wurde diese Studie weltweit als erfolgreich dargestellt. Auch in Deutschland bekommen die 300.000 ME-Patienten von überall zu hören, oft mit Hinweis zu PACE trial, dass diese Therapien helfen. Behörden und Ämter nötigen Patienten oft zu diesen Therapien unter Androhung der Streichung der finanziellen Leistungen. Medizinische Leitlinien und die Mehrheit der Medienberichte verbreiten ebenfalls die Information, Gesprächstherapie und ansteigendes körperliches Training seien hilfreich und notwendig, oft unter Berufung auf PACE trial.
How a False Study Result can cause Harm
This study was presented in the media worldwide as a success. Also in Germany the 300,000 ME patients are told from all sides, often with reference to the PACE trial, that these therapies help. Authorities and officials often force patients into these therapies under threat of cancelling their financial benefits. Medical guidelines and the majority of media reports also spread the information that CBT and GET are helpful and necessary, often with reference to the PACE trial.

The big problem in Germany is that CFS is classified in social service guidelines as a mental illness / depression, I know quite a few people who have been unable to continue working with CFS, but before they could get a disability pension they were forced to undergo GET, which made their health a lot worse, and then had to accept a diagnosis of depression to get the money they needed. And even that takes three rounds in court. I'll be spreading that article over here.

 

[Effi]

Good article. Basically points out all the flaws of the PACE trial. Great to see this story being told in different languages. I loved the beginning (liberal translation to English)

Imagine a large and expensive study being held in order to study people who cough for a variety of reasons. From choking, over bronchitis to COPD (chronic obstructive pulmonary disease).

At the end the researchers announce that smoking helps with pneumonia and so from now on people with pneumonia will be forced to smoke.

What sounds like a story from a satirical magazine, turned out to be a reality for people with the disease ME (Myalgic Encephalomyelitis).

Author is a fellow patient (severe). She's on twitter: https://twitter.com/XIxMelaniexIX

 

[TiredSam]

Sent link to this article and link to petition to Fatigatio, the German CFS organisation, suggesting they distribute both to all members. See if anything happens.