New German guideline for ME published today

No, I haven't, but it's a brilliant idea and I'm sure someone has, thanks! And it's good to know to download important stuff in the future.

 

It would be in the browser cache if:

1. the browser does not automatically delete the cache
2. and if the user hasn't deleted it.

If the computer can be searched for either:

1. the Filename
2. or Filetype

it might be possible to find it. I'm guessing it's a windows computer?

If the pdf reading program saves a history it might be visible there too. Something like a recently opened files option.

It might also be worth searching for the file, as people sometimes save pdfs to places like google drive, so I would search for the file and filter by date to get the earliest results first.

 

I saved it, and if I remember correctly, @Philipp linked to an archived version.

 

Wait a minute, didn't @Philipp archive a copy of the original in post #153?

 

I hope you didn't know the number by heart, that would creep me out.

 

It's good the letter is saved. If it were me I'd spread about it in full as widely as possible. It's a gem.

 

No! I just whacked out my post, then thought I would look earlier in the thread to see what you were all talking about.

If i was that observant, It wouldn't have taken 3 tries to find something that is big and was in the middle of the fridge yesterday!

 

It truly is a gem but the problem is that there's nowhere to spread it. I tried to spread it on German forums and no real reactions. People thought it was ok, because she said bedridden people should be activated "but within their limits" (or something meaningless like this). So most people argued that it was ok and are not going to quit their membership. And Fatigatio managed to steer the discussion to "How mean that they published a private letter". The discussion has already completely stopped and one's upset anymore.
I guess it would have been quite different if Sonya Chowdhury had written this letter to NICE.

 

That sounds so ridiculous.

Not being able to speak German, it's hard for me to comment on their use of language, but it doesn't sounds as if this nonsense could just be down to troubles with translation.

 

@Joh in which forums did you try to spread it?
Could be, i have a copy, too for sure ... gems forever...

 

You can only do your best, @Joh. I'm sorry if my comment was insensitive.

 

No, it wasn't at all, I'm so sorry! It's my English. I didn't mean to criticise you, I wrote merely in complete agreement and just wanted to express how sad it is that a lot of pwME are not interested in this revealing letter. But it is a gem and should be used.

 

No it's not - your english is very good!

 

The original "Methodenreport" containing the outrageous Klasing letter can be found here:

https://web.archive.org/web/2018020...denreport/053-002_Methodenreport_30.01.18.pdf

To reproduce it might however be problematic, if it is actually regarded as private corresponcence there could be a copyright issue, among others.
(although to be clear by its being signed as "chairwoman of Fatigatio" and being part of the Delphi process communications I believe that would be hard to argue.)

Given how no other changes or corrections of the blatant misrepresentations about Lost Voices Foundation have been made to the document as of yet I find more of this clandestine BS, obviously to obscure Klasing's actions in the process unsettling, not to say outright scandalous since it implies further ties with DEGAM or at the very least a pronounced will to cover up instead of reacting officially.

And that's not even touching on the whole point of the Delphi model...

there are some more details I am not sure I can share, it would seem Klasing has not only threatened legal actions in the past.

At this moment I am quite disgusted by the head of the "largest patient organization" which takes on more and more of the shape of a trojan horse for ME, figuratively speaking.

 

I don't think there should be any problem with reproducing a letter that was published in an official report. Also, it was sent as part of a patient organisation's work with a government body - that should be open to public scrutiny anyway.

 

I absolutely agree.
But seeing how it is not part of the official report any more, and was claimed to be private and published mistakenly, it might be more tricky.
Total BS if you ask me, but I'm only just awaring you guys of this angle and the fact that she has taken legal actions in the past.

I really do hope this whole charade falls flat on its face... getting so sick of people like this ruining the efforts others invested so much blood, sweat and tears in, just to see it brought down by power-hungry idiocy now.
From what I gather Fatigatio was a different organization before 2011. Oh, btw that's when Klasing took the lead. Yikes.

 

I don't think that means that there will be any problem with reposting or criticising the content of the letter.

 

I only now saw the link to an archived version of the original Methodenreport was posted before in the thread, will leave mine still so it can be easier found.

I'm thinking, maybe it would make sense to condense the gist (or the "gems") of the guideline into a few lines of easy language.
Not-so-intellectual people might then better understand how it is doing harm and what it actually means for a patient organization to support it.

still waiting for Lost Voices official statement, it should highlight some more of the key problems.

 

Blog in the German Huffington Post on this subject, http://www.huffingtonpost.de/amp/en...eidlinien-werden_de_5a857575e4b0f6d8b54a9a9a/

Google translate to English, https://translate.google.co.uk/tran...erden_de_5a857575e4b0f6d8b54a9a9a/&edit-text=

 

another day, another "Methodenreport".
apparently they took the last version offline again and uploaded yet another revision:

http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Muedigkeit_Methodenreport_redakt_korr_20-02-2018.pdf

and guess what - it's been redacted once more.
Here's the (not entirely) new paragraph:

"Die Vorstände der genannten beteiligten Fachgesellschaften / Orgnisationen stimmten den Inhalten der Leitlinie und insbesondere den Kernempfehlungen im Konsens (>75%) zu. Die Deutsche Gesellschaft für ME/ CFS und die Deutsche Gesellschaft für Schlafforschung und Schlafmedizin haben der Leitlinie insgesamt nicht zugestimmt und tragen die Inhalte als beteiligte beziehungsweise kommentierendeFachgesellschaft nicht mit. Auch die Selbsthilfegruppen Lost voices und Bundesverband Fatigatio haben als kommentierende Beteiligte an dem Konsensusprozess der Leitlinie nicht zugestimmt."

translation:

The boards of the above-mentioned expert societies / organisations approved the contents of the guideline and in particular the core recommendations in consensus (>75%). The Deutsche Gesellschaft für ME/ CFS and the Deutsche Gesellschaft für Schlafforschung und Schlafmedizin (German Society for Sleep Research and Sleep Medicine) have not approved the guideline as a whole and do not support its contents as a participating or commenting expert society. The self-help groups Lost voices and Bundesverband Fatigatio have also not agreed to the guideline as commenting participants in the consensus process.

No other changes as far as I can tell.
edit: there are. look below. Now DEGAM states no voting rights for any organization concerned solely with "CFS" in the process.