New German guideline for ME published today

That made me smile and thanks for the info.

They must be kidding. They now corrected (as asked) the names from the participants from the Deutsche Gesellschaft but mixed up Klasing and Krüger (poor Nicole Krüger is now head of Fatigatio). They also believe that FaRtigatio (I recently made that typo and found it so fitting, that I'm going to keep it) belongs to the "Bündnis ME/CFS". It's so disrespectful that after one year of contact they can't get the names of three people and three patient organizations right - in the third try. As far as I can see the Eingaben from the LVS are still missing?

This seems not to be the last Methodenreport.

 

oh, there's more:

they added an explanation as to why NO ONE concerned with "CFS" except for "Dr. Carmen Scheibenbogen" (EUROMENE, btw omitted an academic title of Professor) WERE GIVEN VOTING RIGHTS and are now only listed as "commenting participants", but instead mentioning a cancer-related self-help group was granted voting rights:

"Bezüglich spezifischer Selbsthilfegruppen/Patientenvertretungen wurden die Krebsberatungsstelle und Krebsselbsthilfekontaktstelle, die Deutsche Gesellschaft für ME/CFS sowie das Bündis ME/CFS, Fatigatio und Lost voices als betroffene identifiziert. Dabei deckte nur die erstere die Breite der Leitlinie ab, während die übrigen nur einen Teilaspekt (CFS), zu dem es keine Kernempfehlungen in der Leitlinie gibt, kommentierten bzw die Leitlinie nur unter diesem Aspekt betrachteten. Letztere erhielten daher nur Kommentierungs- aber kein Stimmrecht."

translation (deepl.com):

[With regard to specific self-help groups/patients' representatives, the cancer counselling centre and cancer self-help contact point, the German Association for ME/CFS as well as Bündis ME/CFS, Fatigatio and Lost voices were identified as concerned. Only the former covered the width of the guideline, while the others only commented on one aspect (CFS), for which there are no core recommendations in the guideline, or considered the guideline only under this aspect. The latter therefore received only commentary but no voting rights.]

they also keep on grouping Fatigatio under "Bündnis ME/CFS" which has not been true since 2011 any more if I'm not mistaken.

add in typos, random changes of fonts mid-sentence etc...
I wonder if they hired some drunk chimps to redact this report or if it is all meant just to show how little DEGAM cares.

After all, this document is not the Guideline itself which will be read by medical practitioners.

 

Yes, the others are called "Prof xy", just Prof. Scheibenbogen is "Frau Dr. S." throughout (I think she's only mentioned twice). Is it clear if she used her Stimmrecht?
I have to check the other stuff. I think now the DG is a patient organization but LVS is still a self-help-group (as well as Fartigatio, but I guess that it true from their Selbstverständnis).

Oh, also new, now you can see comments from the extern Gutachter from page 68, check them out. It's clear that they couldn't be arsed to spend more than 10 minutes with the guideline. Have to go through it in more depths, just at first glance:

Translation:

Beyer:

Günther Egidi:

 

I can't see any of it reproduced? They seem to refer to the Eingaben of DG and Fatigatio? A strange way of referring to them as they were officially members of the guideline process.

 

@Joh and @YaS , thank you!

 

Fatigatio finally published a statement regarding the new guideline:
https://www.fatigatio.de/stellungnahme-zur-s3-ll-muedigkeit/

it reads amateurish, no mention of controversy surrounding changes in the "Methodenreport".

Fatigatio basically claims to have tried all but achieved very little.

The rest pretty much consists of passages that seem in large parts like reactions to criticisms of the last month.

They also announce to produce a collection of their entries into the consultation process at the bottom of the page in the future.

There are, however, two sentences which I find the most telling:

"We are pursuing the goal of making further changes, particularly in chapter 5.7, in the next guidelines.
It is a start in the right direction and we will continue all our efforts in the interests of the sick. We seek dialogue and hope that the small steps will lead us to our goal, namely guidelines that correspond to the current state of research and knowledge."

What a tired attitude. Sigh.

 

hmm.

 

Fatigatio now secretly edited the statement. I noticed that Fukuda, that they originally recommended, is now missing. Who knows what else is edited. It's so typical, that they did it secretly, after people complained, just because they're afraid to lose members.

 

Pathetic, is it me or does this start to look like a recurring pattern?
Further changes, anyone save a copy of the previous version?

 

I had no idea that CFS is also mentioned in the German guideline about functional disorders: "Dealing with patients with nonspecific, functional and somatoform body complaints".

Just read about it today. Used the search function and CFS is mentioned 13 times in the guideline: http://www.awmf.org/uploads/tx_szle...oforme_Koerperbeschwerden_2012-abgelaufen.pdf

It's currently being updated (but there's no sign the new one might be better).

 

Waste-of-space attitude.

 

Fatigatio secretly changed their statement a second time.

I can really recommend to visit the Fatigatio forums to anybody who's still a member and read the chairwoman's latest comment - a real gem. She claims it's illegal to talk about her infamous letter. The sad thing is that they're not joking, they have sued critical members in the past. My hope is that my dormouse arms are too short and tiny to put handcuffs on them.

ETA: Clarified by inserting *She claims*

 

@Joh and others; just out of interest, how would you feel about Fatigatio becoming a member of S4ME?

 

What a splendid use of money, time, and energy amongst a very sick patient community.

@Sly Saint I guess that would depend on what one would want to achieve. They are obviously not very effective and probably not even really on our side, much like AfME has been. They have repeatedly shown that they are incapable of adhering to the normal principles used in discussions between grown-ups or understanding valid criticisms, so any possible interaction with them seems like a waste of time to me.
So I guess this would be the same discussion as in the other thread wrt AfME joining here or inviting other BPS shills for debate. I just do not see the Fatigatio's current leadership as able to understand what they are doing wrong since the sheer possibility of that is not included in their world-view as far as I can tell.

 

I follow the other thread and get the different perspectives. In the end I guess I would be happy that they might learn something (e.g. that not everybody in the US uses Gupta and recovers like they recently claimed, about severe cases and that ME is not deconditioning, that "chronic exhaustion syndrome" is not a helpful term or basically everything). The board is very aggressive and likes to censor and to write threatening personal messages but I'd actually like that they would have to play by the rules here and I could call in bodyguards like @Andy Kiefer.

 

The report has also appeared here http://docdro.id/rdzAXi8 which is lucky, as it seems a shame if it were to get lost in any way.

 

We were informed it's illegal to share, link to, cite, send in personal messages or use the PDF-doc. You are now an outlaw in Germany.

 

Oh dear, I didn't know that. Oh well, too late now.

Is it common knowledge that Edelgard doesn't even have ME/CFS, but a mast cell disorder?

 

Where have you heard this? That would be... interesting.

What also strikes me as interesting is that they apparently think they can declare sharing documents that were made publicly available 'illegal'. I sincerely doubt there is any legal basis whatsoever for this, but they may have a case against whoever was responsible for uploading the original document without checking it for errors and so forth. This is not even an internet age thing, this is the same as trying to retroactively declare passing around the entire friday paper illegal because there was a reprinted & corrected article in the monday edition. I mean, come on.

 

I'll PM you.