Blog on a said-to-be-bad official German report on ME/CFS (German with link to English translation)

[Dolphin]

Katharina Voss
February 15 at 1:27pm ·

New blog entry!

No matter if NHS in GB, HHS, NIH and CDC in USA or BMG and RKI in Germany - they are taking us for a ride all over the world!

Führt das Robert Koch-Institut uns an der Nase herum?

"Zuerst die schlechte Nachricht: Das Bundesministerium für Gesundheit (BMG) gibt normalerweise keinen Cent für die Erforschung der Myalgischen Enzephalomyelitis und des „Chronic Fatigue Syndroms“ aus.

Und nun die gute: Im vorletzten und letzten Jahr hat das BMG mal richtig was springen lassen für die „ME/CFS“-Patienten. Es hat nämlich das Robert Koch-Institut (RKI), die „zentrale Einrichtung des Bundes im Bereich der Öffentlichen Gesundheit zur Erkennung, Verhütung sowie Bekämpfung von Krankheiten“, [BMG, 2016] um einen Bericht zum derzeitigen Erkenntnisstand bezüglich des Krankheitsbildes gebeten.

Vielleicht hätte ich es andersrum sagen müssen, nämlich so: Die gute Nachricht ist, dass das BMG nichts für “ME/CFS“ ausgibt und die schlechte, dass es heuer was hat springen lassen. Denn um es gleich vorwegzunehmen: Das RKI hat sich bei der Erstellung des Reports mit dem Titel „Erkenntnisstand zum „Chronic Fatigue Syndrome“ (CFS)“ nicht mit Ruhm bekleckert. [RKI, 2016] Das Papier, das ohne Literaturliste und Anhänge gerade einmal 11 ½ Seiten umfasst, ist mehr als dürftig und die Fakten sind so schlampig recherchiert, dass es kaum lohnt, sich inhaltlich näher mit diesem sprachlich aufgeblähten Quark auseinanderzusetzen. Deshalb möchte ich mich nur auf drei Aspekte fokussieren. ..."

http://meversuscfs.blogspot.de/2016/02/fuhrt-das-robert-koch-institut-uns-der.html


She seems to have set it up that when you go to the page, there will be a translate button into whichever language you desire.
Or just click here:
https://translate.google.com/transl...koch-institut-uns-der.html&edit-text=&act=url

The English translation of this is a little difficult to read, particularly in some places.

Part of the problem may be the different word order in German e.g. the main verb is often at the end of the sentence.

 

[Dolphin]

The result of the - well-intentioned - efforts of Initiative Group ME / CFS Rhineland-Palatinate is a prime example of how the involvement of public authorities and institutions can properly backfire if the patient or selected, qualified patient representatives are not involved in the process. That should all of us - and I include myself quite naturally with a, because I was very naive at the beginning of my commitment - be a warning. Before we engage in cooperation, we must always look carefully whether we can fully trust outside supporters and if we are involved in all processes. Transparency should be paramount. Otherwise, you can better steer clear of it. Because no report is better than a so!

 

[roller]

as long as this crap can act without ever been taken responsible for their neglect and mistreatment, the population will just get sicker and sicker.

its pervert that citizens survival is bound to ppl who stupidly stare over their desk at you or run occassionally some 'tests' that prove to be more wrong than right.

they are above the law.
in contrast to other professions.

the only sophisticated tech they use are invoicing systems.

 

[TiredSam]

No translate button on my screen. From what I can understand (it's a lot to read and my brain's tired) The Robert Koch Institute / German Health Ministry has produced a report into ME/CFS (11 pages long) which ignores all the latest research and recommends not doing lab tests, but rather GET and CBT.

Also described is a load of political stuff about how the report came to be written. According to the blogger, the report was initiated by a bunch of psychologists and psychotherapists who set up an group to help people with ME/CFS, although only one person in the group actually had ME/CFS. They invited a minister to their group in 2013 who said he'd do something about the dire situation of patients in Germany, the group celebrated this as a success, and 3 years later this report is the result. Apparently the group of psychs was warned by seasoned ME advocates not to go cosying up to officialdom but ignored that advice. The blogger Katharina Voss is scathing about their naivety.

Katharina Voss is the mother of two daughters with severe ME who has had to deal not only with their illness but also with their school and social services making her life hell. She's certainly the genuine article. I haven't read the Robert Koch Institute report myself, and don't know anything about the politics as it was all just before my time, but I know that the visit of the minister generated a lot of hope, and that if this report is as KV describes then it'll be a major disappointment.

 

[TiredSam]

I've just read the Robert Koch report and it's as bad as described. They basically trawled PubMed up to 2014 and swallowed all the BPS studies, ending with a recommendation for GET and CBT. No mention of the IOM report or developments since 2014, so it's out of date before it's printed. It looks like they gave the job to a student on work experience, who did a search for "CFS" at PubMed and cobbled something together. Appalling.

 

[Dolphin]

I've just read the Robert Koch report and it's as bad as described. They basically trawled PubMed up to 2014 and swallowed all the BPS studies, ending with a recommendation for GET and CBT. No mention of the IOM report or developments since 2014, so it's out of date before it's printed. It looks like they gave the job to a student on work experience, who did a search for "CFS" at PubMed and cobbled something together. Appalling.

Is there a link to it somewhere?

 

[TiredSam]

Is there a link to it somewhere?

http://www.rki.de/DE/Content/Gesund...kenntnisstand_2015.pdf?__blob=publicationFile

It seems to be just an uncritical review of the English language literature up to 2014. I can't imagine Carmen Scheibenbogen or the German ME advocate group Fatigatio (http://www.fatigatio.de/aktuelles/) were asked, or if they were their answers must have been ignored.

I think there may be different views of the politics of how the report came to be written, and I don't want to get into that. For example according to some reports when the minister visited he met with a lot of patients. http://www.in-engen-grenzen.de/veranstaltungen/ There's no suggestion that the psych group who organised the visit was trying to push the BPS model, in fact quite the reverse, they'll be as disappointed with this report as everyone else.