New German guideline for ME published today

"denn wir sehen uns der gesamten Patienten- und Hausärzteschaft gegenüber verpflichtet."

If only...

 

Forgot to add for foreign readers that the ridiculous claims in the facebook post were written by the president of the German Society of General Practitioners and Family Physicians. This makes it even worse. Prof. B. was also one of the main authors of the guidelines tiredness.

 

'massiven Druck durch eine bestimmte Gruppe von Patientenvertretern'
('massive pressure from a specific group of patient representatives') -
So, which specific group is she talking about?

'möglichen Deutungen' ('possible interpretations') of ME? Is it a disease or a piece of art?

And for the rest about pressure and threats, I'd like to see some proof, too!

 

The Fatigatio (biggest German patient organization) leaves me speechless again. Just saw this new letter on their website:
https://www.fatigatio.de/fileadmin/...itsrechtsverletzung_Rechtliche_Grundlagen.pdf

Instead of fighting the guideline, they apparently only care about their own reputation and consulted a lawyer about the "private" mail of their CEO Edelgard K. ("bedridden patients should be activated" etc.) that was included in the Methodenreport. DEGAM had already taken it out of the Methodenreport, but Fatigatio still spent money (I suppose?) on a lawyer to claim that they can force every online forum to delete any "copies, discussion, comments, evaluations, sharing, citations" of it.

Instead of thinking about what was said in this "private" mail (signed as CEO of the biggest patient organization) and if it's appropriate to hold and spread those beliefs as CEO, Fatigatio is also gossiping about pwME in this letter again.

 

So edelgard is muzzling members again, as those whose critiques were claimed to be "vereinsschädigend" (damaging to association?) will surely lose their membership now.

I'd like to see the actual numbers of members of fatigatio this year. Are they flocking out in droves yet?

 

Even to really ill-informed patients, surely this looks terrible? I guess a lot of people are just too caught up in their own lives and ill-health to care?

 

I don't know if they don't care. Maybe they just leave fatigatio silently... Hopefully they will find their ways to other groups.

Maybe they are worried, but where to voice it? In the member's forum, where you have to log in with your full name and membership number?

It is easy to make it look like there are only a few troublemakers if the rest can not get together to discuss their concerns.

 

I simply cannot understand how members don't leave this organization. Everytime there comes a new guideline about tiredness Fatigatio behaves in the same manner - disgraceful! Shame!

 

I would leave an organization instantly if something like this censure happened. We could need money for real fights before courts, processes that might benefit many people with ME.

 

Yay! The German Association for ME/CFS managed a little victory in regard of the guideline tiredness.



https://www.mecfs.de/degam-veroeffentlicht-revidierte-fassung-der-leitlinie-muedigkeit/

Google Translate: http://translate.google.com/translate?hl=&sl=auto&tl=en&u=https://www.mecfs.de/degam-veroeffentlicht-revidierte-fassung-der-leitlinie-muedigkeit/&sandbox=1

 

That's great, I could kiss them
Thanks @Joh for this update!!!

 

I've just read it. This is really a great success. It's very important.

Please German people with ME, give a chance the German Association.

 

Interesting (on p. 40 of the guideline), their own reason for being "selective":

 

ME/CFS has an esteemed prevalence of 0,1% (like HIV) to 0,42% (more than MS).
So it is NOT low incidence for doctors to have patients with this disease. What is low incidence, is that doctors know about the disease, its symptoms and how to diagnose it correctly.

It would have been a great step if the guidelines were informing doctors about ME/CFS according to the latest scientific findings.
It is a big missed opportunity.

Every university hospital has departments for HIV/AIDS and for MS, respectively. For ME/CFS, there is 1 (ONE) for the whole of Germany...


I'm very thankful for the important work of the Deutsche Gesellschaft für ME/CFS. I recently joined the club.

 

Yes, how DEGAM worded this enraged me. But I guess in the end, however they like to hide it behind their words, what counts is that the chapter about ME doesn't have official guideline status anymore and is now only the opinion of the authors and that it can't be used by authorities against pwME.

In addition to this sentence there are also several little sentences like these that are new:

(Not sure about the last 3 but I think they weren't there before?)

Will check against the last version of the guideline when I have more time. But it's every time so very upsetting to read in this appalling anti-science guideline (or now anti-science anti-guideline).

 

Wow, thank you @Joh for checking, very valuable!

I don't think these statements were in there before. I remember it sounded pretty much like "Evidence is clear - CFS is psychological, only a minor problem, and CBT/GET help". It seems this has been relativized to "it's our opinion". It's not great because I fear many doctors hold the Degam's opinion in high esteem. But I would say they can't just change this back in the future, so it's a small success.

 

As always thank you to @Andy for making the situation of pwME in Germany visible internationally.

 

I have just received an email that Edelgard Klasing has died.

 

Der Fatigatio e.V. Bundesverband Chronisches Erschöpfungssyndrom

(CFS/CFIDS/ME)

trauert um seine Vereinsvorsitzende

Edelgard Klasing

* 6. Juli 1958 † 1. Juli 2018

die völlig unerwartet und viel zu früh aus unserer Mitte gerissen wurde.

Edelgard Klasing war eine außergewöhnliche, großherzige und stets hilfsbereite Frau, die sich seit über 20 Jahren für den Bundesverband Fatigatio e.V. in verschiedenen Positionen - wie z.B. Selbsthilfegruppenleiterin in Dortmund, Abgesandte für die LAG NRW, Mitglied im erweiterten Vorstand, Kassenwartin, Vorsitzende - für Betroffene engagierte und die trotz eigener schwerer Krankheit oft bis tief in die Nacht für den Verein und seine Mitglieder arbeitete und anderen ME/CFSlern Mut machte.

Sie arbeitete - unter großem Verständnis und Mitgefühl ihrer engsten Familie für unseren Verein und seine Mitglieder, weil WIR ihr besonders am Herzen lagen.

Ihr Denken und Handeln galt nicht nur dem Erfolg des Vereins, sondern auch allen Mitarbeiterinnen und Vereinskollegen.

Bis zuletzt setzte sie sich für die an ME/CFS-Erkrankten ein und hatte immer für alle ein offenes Ohr und Zeit für persönliche Worte.

Ihrer Familie gilt unser tiefes und herzliches Mitgefühl.

Wir werden sie sehr vermissen und in tiefer Dankbarkeitan sie zurückdenken.

Fatigatio e.V.
Vorstand, Mitarbeiterinnen und Mitglieder

 

I was just reading a translation of the german wikipedia entry for CFS:

"In the mentioned list of criteria from 2011, the disease is divided into four stages:

1. Easy: an approximately 50% reduction in activity level
2. Moderate: usually tied to the house
3. Hard: usually tied to the bed
4. Very difficult: completely confined to bed and dependent on help with basic activities"

https://de.wikipedia.org/wiki/Chronisches_Erschöpfungssyndrom