New German guideline for ME published today

yet she signed it "chairwoman of Fatigatio"...
the whole letter reads very strange, including cringe-worthy references to tobacco epigenetics and a shared month of birth with the Head of DEGAM and describing other activists as lacking "respect and decency". It almost appears af if a private correspondence was leaked, possibly intentionally to provoke reactions.

then there is also the fact that the new guideline text was released clandestinely on DEGAM's site, that is none of the participating organizations seem to have been notified; add to that Lost Voices Stiftung's contributions were completely omitted in the new report, they had done excellent work in critiquing the previous guideline text.
and on AWMF's site (which is responsible for publishing) it states the guideline paper is still in review:
http://www.awmf.org/leitlinien/detail/ll/053-002.html
this is all very strange...

as for German pwME not showing much presence I suppose there's both a lack of being informed but also German mentality.
I would describe it as complaining much but not being ready to stand up and do much, not even protest until one feels safe in a crowd...

 

Apparently Frau Klasing has also found what everyone else worldwide is searching for, a marker:

My mother went to the last Fatigatio conference as I'm homebound and came back with these adventurous stories about genes that have been identified (and some lessons on positive thinking). I even bought the DVD from the conference but don't dare to watch it as I expect it to be too upsetting.

 

Yep. it makes it difficult, but it cannot be changed. There might be the risk of being called 'militant', which is mixed up with determination, but I actually don't care.

I am just so happy about this discussion here; at least for me a premiere.

 

That was very strange to me. Does anybody know the publications and can link? It sounded like a direct contradiction to other findings. Furthermore, it reminded me of Prof. Stark's theory about an overactive amygdala being the cause, leading to high cortisol levels and thus to chronic stress blah, blah, blah.

 

Klasing does not bother to cite a source.
A quick google search for "Cortisolachse, NR3C1, CFS" however will turn up a number of articles on stress, childhood trauma, epigenetic predispositions, psychosomatic stuff and so on...

 

There was this old paper by Reeves et al, However this is the infamous Wichita cohort.

https://www.ncbi.nlm.nih.gov/pubmed/16740143

 

Thanks @ukxmrv. What does that mean, "infamous Wichita cohort"?

Edit: The authors don't sound German. The statement suggested German geneticists and microbiologists made publications.

 

Yes, that's how it sounded, given the context.

 

to me it seemed like she made it out to be a self-evident fact:
"In particular, it is also known that cortisol axis is altered in CFS patients. The cause seems to be a change in the NR3C1 gene. This is one of the few markers that are meaningful."

a few paragraphs above she wrote:
"Further studies are also interesting, which show that early childhood trauma or stress during pregnancy, as well as environmental stress factors, change the genes by methylation, partly up to future generations.
http://www.pharmazeutische-zeitung.de/index.php?id=6438"

Note that citing a pharmacist newspaper article is close to a joke about useless advice in German in itself
("Tipps aus der Apothekenzeitschrift")...

I doubt Klasing meant this Belgian paper from 2017:
https://www.ncbi.nlm.nih.gov/pubmed/29275786

we will probably never know.

 

That reminded me of Prof. Stark's statements.

 

I don't get it. If the methylation differences were small, how can you say that

And how can you prove without a doubt that (childhood) trauma are the cause of DNA methylation?

 

just to be clear, I did not mean to say any such studies had any relevance. It was just the most recent one of this particular BPS flavor I found. I'm pretty sure everything in this vein crumbles as soon as criteria for patient selection are revealed...

as you pointed out this cortisol axis idea seems several years old...

meanwhile, that ridiculous Klasing letter seems to have caused quite some discussion. it was related that she claimed an "accidental publication" as if that made those statements any more excusable for the head of the largest patient organization...

 

The CDC did an expensive population based study of CFS, ringing random people and asking them about symptoms, but there are concerns that they used an overly loose criteria for 'CFS', and so there are questions about whether the data they collected is of any value: https://www.ncbi.nlm.nih.gov/pubmed/12860574

Interesting. Thanks for letting us non-Germans know.

 

I understood that. I was referencing to this study. To me, it seems far fetched to make a correlation between childhood trauma abd a certain DNA's changes without further research. There are hundreds of other possibilities why there are DNA changes.

 

Thank you, @Esther12!

Edit: What is the problem with that study?

 

I've forgotten a lot of the details now, and it was a bit before my time anyway so I don't think I ever properly looked into it myself. I think that part of the contgroversy was that a huge % of CDC CFS research funding was spent on something of really questionable value.

I've just dug up some comments from pubmed from @Tom Kindlon on this, and it makes it all the more annoying that these comments are soon to be removed from easy view.

https://www.ncbi.nlm.nih.gov/pubmed/16356178/#comments

Additional comments are currently available at the above link, and also at:

https://www.ncbi.nlm.nih.gov/pubmed/17109739/#comments

https://www.ncbi.nlm.nih.gov/pubmed/19804639/#comments

 

Here is what the TK (a German health insurer) says about treating "CFS":

 

Thank you @Esther12!

 

Statement of the Lost Voices Stiftung about the "guideline tiredness" (in German): https://www.lost-voices-stiftung.or...nformationen/stellungnahme-ll-und-pace-trial/

 

And here is what a Swiss insurer writes:

https://www.css.ch/de/home/privatpe...heitslexikon/c/chronische_muedigkeit_cfs.html