Valentijn
Guest
Do they cite to any sources? This sounds like the usual Simon Wessely or Peter White opinions that they shove into their papers without any supporting evidence.
New German guideline for ME published today
- Thread starter Joh
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- 2018 germany guidelines me/cfs
Joh
Senior Member (Voting Rights)
They do cite sources, (it's a little hidden @Inara, at the end of the page the little arrow): The last guideline tiredness (2011), the Fatigatio (the German Action for ME) and the Pschyrembel (2012).
https://www.tk.de/techniker/service...kungen/chronisches-muedigkeitssyndrom-2016418
Actually the article improved quite a bit. I checked and it was last updated October 2017. I'm sure it said before e.g. that belonging to self-help-groups leads to a worse prognosis and that part is gone and everything sounds less extreme. Of course still bad but in comparison to other official German texts I'd say it's even one of the better ones.
Translation:
"Preliminary statement
In the next few days we will be publishing a detailed statement and dissociation concerning the guideline "Tiredness", which was published by the German Society of General Medicine (DEGAM) on February 1,2018.
The Lost Voices Foundation, as part of the ME/CFS alliance [Bündnis ME/CFS], had participated in the DEGAM survey process. Unfortunately, it became clear in this process that there is no interest at all to take current international research findings into account and thus adequately assess the clinical picture of ME/CFS. We are very outraged that the method report, on page 71, states:"The boards of the above-mentioned specialist societies / organisations agreed with the contents of the guideline."
The Lost Voices Foundation has not at any time agreed to the Guidelines. We dissociate ourselves clearly from the new S3 - guideline Tiredness.
Since the method report, which is part of the revised guideline "Tiredness", does not contain our votings, recommendations and alternative texts, we have decided to publish them here."
this is so outlandish.
I mean, DEGAM can't possibly have thought this would go unnoticed now, or can they?
That is to be expected and works for the discussed Klasing letter, but blatant misrepresentation? how would this particular omission fit in?
just to keep people busy, attrition, or what?
Joh
Senior Member (Voting Rights)
Honestly I don't think DEGAM left the Lost Voices Stiftung statements out on purpose. I would be thrilled if they did it on purpose because it would mean that we're worth to be silenced (as in Gandhi's first they ignore you, then laugh at you, then they fight you) and this would mean we're in the fighting phase but I'm quite sure we're still in the being ignored phase. I guess they just forgot because ME is not a disease in their eyes and we're stealing their time for real diseases and are annoying and they can't muster the interest to check if our work is included (what is much worse than being left out on purpose because we're regarded as a threat in my opinion). I hope you're right that it was a planned strategy, it would mean that they even read and thought about it (what I doubt).
well here's the thing. while I am new to this I find it hard to believe they would 'forget' to include LVS of all participants given their interaction since 2010.
https://www.buendnis-mecfs.de/aktivitäten/überarbeitung-der-leitlinie-müdigkeit-teil-1/
https://www.buendnis-mecfs.de/app/d...e_Buendnis_an_DEGAM19.8.2011.pdf?t=1332927326
so they are definitely annoyed, but for good reason since they have likely never dealt with resistance like these ME people (and it's getting increasingly hard to ignore the facts), I suppose.
DEGAM messed up before by prematurely publishing unauthorized guidelines, resulting in an influx of protest letters then blaming patient organizations for leaking the text as I understood it but this here just doesn't seem to make any sense... why give us the publicity?
Joh
Senior Member (Voting Rights)
They also forgot the German Association on the first pages of the Methodenreport and messed up names and organizations in a list. But as I said I would be thrilled if they did it on purpose but I fear it's pure lack of interest. But not arguing, would be very happy if you're right. But they wouldn't have gained much as they have to correct the formal mistakes. The German Association already wrote a letter requesting a correction of the formal mistakes and the Lost Voices Stiftung apparently did the same - so we should get a (at least) complete Methodenreport soon.
I believe that sadly overestimates the resistance and impact from the German ME community (so far). A few letters that go into the dustbin or emails that can be deleted. As we're taken hostage in our bedrooms there's nothing much to fear. I'm part of another movement and am used to quite different (legal) forms of civil disobedience, direct action, numbers and community organization and can't see any kind of real movement yet for ME in Germany. But it's growing and we can all help to make it happen.
I am too tired to re-read the entire thread right now and my memory hasn't been all that great for the last couple days so sorry if I bring up something that was already discussed at length, but I want to write this down before it escapes me.
On page 93 of the Methodenreport I found this little gem:
Suggested was:
Won't do us much good obviously because our doctors on average simply deny that we have PEM (while at the same time they don't wanna learn how an anaerobic threshold works), but at least we have it on paper.
There also is a part on CoIs where one has to list scientific interests and schools of thought one belongs to - assuming I understood this part correctly - and most of those people left that part blank. I would argue that re-defining the word CFS against using it as a shorthand for ME/CFS, which for the most part is defined by the existence of the symptom of PEM, either outs you as belonging to a certain school or as not having enough expertise to comment on the topic.
Edit: Frau Baum, who did not declare a CoI in the aforementioned section of the recent LL Methodenreport has apparently been at it for a while, looking at page 35 of the document Inara reposted:
On page 93 of the Methodenreport I found this little gem:
Suggested was:
This was answered by the DEGAM people with:
This flat-out means that this entire thing is not a document on ME/CFS, but on some vaguely defined colloquial use of the term CFS.
Won't do us much good obviously because our doctors on average simply deny that we have PEM (while at the same time they don't wanna learn how an anaerobic threshold works), but at least we have it on paper.
There also is a part on CoIs where one has to list scientific interests and schools of thought one belongs to - assuming I understood this part correctly - and most of those people left that part blank. I would argue that re-defining the word CFS against using it as a shorthand for ME/CFS, which for the most part is defined by the existence of the symptom of PEM, either outs you as belonging to a certain school or as not having enough expertise to comment on the topic.
Edit: Frau Baum, who did not declare a CoI in the aforementioned section of the recent LL Methodenreport has apparently been at it for a while, looking at page 35 of the document Inara reposted:
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Inara
Senior Member (Voting Rights)
Is it reasonable to reply on their comments in the Methodenreport, e.g. about the fixation claim? With Mr. Beyer's statements in my mind, it can be supported they are fixed.
https://www.s4me.info/threads/mr-beyer-about-a-twisk-et-al-paper.2318/
https://www.s4me.info/threads/mr-beyer-about-a-twisk-et-al-paper.2318/
Well, I guess the question yet again is more 'to whom do you want to reply in which manner' than whether or not it is warranted.
Since the original document for the Methodenreport has since been removed and reuploaded without that weird private letter, I thought I'd just leave this here for future generations to enjoy.
Since the original document for the Methodenreport has since been removed and reuploaded without that weird private letter, I thought I'd just leave this here for future generations to enjoy.
Mike Harley
Senior Member (Voting Rights)
Hi. I'm very keen to interview a patient in Austria if anyone knows of someone?
I'm running Vienna marathon there in April and try to raise awareness of ME in each country I visit http://www.mikeseumarathons.eu/me-in-the-eu.html
Thanks for any leads/help!
Mike
Joh
Senior Member (Voting Rights)
There's a Austrian website about ME: https://cfs-hilfe.at/ They're also on Facebook and Twitter. I'm sure they speak English. If you prefer I could ask them in German and ask them to contact you.
ETA: The website sounds quite good (because we never know what kind of theories people have about ME
)
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Joh
Senior Member (Voting Rights)
Some more gems from the guideline tiredness.
Apart from having its own chapter, CFS is mentioned several times throughout the guideline (as a chronic form of tiredness). Apparently everything about tiredness is also valid for CFS, no distinction is made.
This one clearly shows their contempt:
This is (in this order) what should be taken into account when diagnosing and treating these patients. This is what they see as "components of tiredness":
Apart from having its own chapter, CFS is mentioned several times throughout the guideline (as a chronic form of tiredness). Apparently everything about tiredness is also valid for CFS, no distinction is made.
This one clearly shows their contempt:
This is (in this order) what should be taken into account when diagnosing and treating these patients. This is what they see as "components of tiredness":
Joh
Senior Member (Voting Rights)
The Fatigatio managed to have their letter (bedridden pwME should be activated etc.) taken out of the Methodenreport! 
I have no copy. The Fatigatio argued it's a "private letter". That's ridiculous, it was about the guideline to the head of the guideline committee and signed as CEO of Fatigatio. The board even boasted with it in the forums ("See, it was private and that's why DEGAM took it out, so you're not allowed to think about the content and it doesn't matter." [in other words]).
I can't believe that DEGAM cooperated.
Cleaned up Methodenreport (all other mistakes are still in it): http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Muedigkeit_Methodenreport_180205.pdf
I have no copy. The Fatigatio argued it's a "private letter". That's ridiculous, it was about the guideline to the head of the guideline committee and signed as CEO of Fatigatio. The board even boasted with it in the forums ("See, it was private and that's why DEGAM took it out, so you're not allowed to think about the content and it doesn't matter." [in other words]).I can't believe that DEGAM cooperated.
Cleaned up Methodenreport (all other mistakes are still in it): http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Muedigkeit_Methodenreport_180205.pdf
Andy
Senior Member (Voting rights)
@Joh , I know you say that you have no copy but are you sure you didn't download it?The Fatigatio managed to have their letter (bedridden pwME should be activated etc.) taken out of the Methodenreport!
I can't believe that DEGAM cooperated.
Cleaned up Methodenreport (all other mistakes are still in it): http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Muedigkeit_Methodenreport_180205.pdf
@Luther Blissett , as the nearest thing we have to a resident hacker (
) can you think of a way that someone who viewed the original document may be able to see the original version? Would it be in the browser cache in some way?