New German guideline for ME published today

Joh

Joh

Senior Member (Voting Rights)
The new German "guideline tiredness" was published today.

ME doesn't get its own guideline in Germany, only a chapter in the "guideline tiredness". It's basically the German NICE guideline for ME. It was last updated in 2011.

http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Aktuelle Fassung 2018/053-002l_Muedigkeit_neu_180121.pdf

The chapter on ME or "chronic tiredness syndrome" as G93.3 is officially named in Germany starts at page 40.

At first sight it looks as horrific as anticipated.
 
This is the accompanying report about the process of the update ("Methodenreport"):

http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf

The three German ME organizations were involved (but rather pro forma, as no recommendation was included): Fatigatio, Lost Voices Stiftung and Deutsche Gesellschaft für ME/CFS (German Association for ME/CFS).

I like the German Association and Lost Voices Stiftung. I'm also a member of the Fatigatio but it's kind of the German Action for ME (or worse because it's much, much more unprofessional) but after I read just one statement of the Fatigatio in the report (bedridden patients should be activated and other gems) I'll finally terminate my membership.

The statements from the German Association can be read from page 73-90.

ETA: I think Prof. Scheibenbogen was also involved in the process but equally not heard.
 
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Just learnt that the DEGAM didn't even inform the involved parties that the guideline is published. Totally unprofessional. The German Association doesn't even has an answer to their last intervention (official complaint) at AWMF level yet. I guess they hoped to surprise the organizations.
 
I won't make a statement regarding fatigatio; last time someone critisized them, they threatened to sew them. No comment on that.

fatigatio said:
I also see a lot like you. The prevalence is in my opinion too high with 250,000 to 300,000 sufferers in Germany. You can not take over the prevalence numbers of America [...]

Also interesting are other studies that show that early childhood trauma or stress during pregnancy as well as environmental stress alter the genes through methylation, and in some cases for many generations.

There are many doctors in our association, including human geneticists and molecular biologists. They conduct their own studies and have published them. In particular, it is also known that the cortisol axis is altered in CFS sufferers. The cause seems to be a change in the gene NR3C1. This is one of the few markers that have meaning.

Furthermore, I agree with you that deconditioning is not the way to go. Permanent bed-rest is ultimately leading to overall deterioration rather than improvement. Therefore, the CFS sufferer should be activated individually and according to his / her energy balance under medical / therapeutic supervision.

Thank you also for not putting us in a pot with others from the CFS scene. We want to discuss on the factual and content level and not on a personal and self-made attitude / idea. Incidentally, I was born in July (6.7.1958), I read in the Vita that you were born on 20.7.1951. Certainly we have many things in common, including the idea of decency and respect.
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Shame! I'm disgusted. And what's that last part about not putting them in one pot with others - WTF?! Why, oh why does this organisation have members?

Oh sorry. It's just so unbelievable :arghh:
 
Muedigkeit said:
Eine rehabilitative Behandlung durch speziell ausgebildete Pflegekräfte hatte nur einen geringen, kurz dauernden Effekt auf Müdigkeit und körperliche Funktion [272]. Kognitive Verhaltenstherapie wie auch schrittweise körperliche DEGAM Leitlinie S3: Müdigkeit © DEGAM 2017 DEGAM Leitlinien — Hilfen für eine gute Medizin www.degam-leitlinien.de 45 Aktivierung zusätzlich zur spezialistischen Betreuung führten zu moderaten Verbesserungen, nicht hingegen die von Selbsthilfegruppen favorisierte adaptive Anpassungstherapie. Letztere wurde subjektiv von den Studienteilnehmern/innen gleich gut wie die beiden anderen und objektiv wirksamen Therapieformen eingeschätzt [273]. Für die Praxis ist wesentlich, die Art und das Ausmaß der anzustrebenden Aktivität in Abstimmung mit den Bedürfnissen und Fä- higkeiten des Patienten festzulegen; ein individualisierendes Vorgehen ist hier angezeigt. Bei der Betreuung dieser Patienten sollten auch die begleitenden, häufig belastenden Symptome wie Schmerzen und Schlafstörungen erfragt und ggf. behandelt werden
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Love the passive aggressive comment about how the coping strategy employed by ME/CFS organisations did worse than the treatment groups.

Seriously though, what sort of 'Spasti' wrote this garbage? PACE led to moderate improvements? In which universe?


Muedigkeit said:
Die internationale Diskrepanz der diagnostischen Gewohnheiten stützt auch die Annahme eines komplexen Ineinanderwirkens somatischer und psychosozialer Faktoren in der Entstehung des CFS. So ist postuliert worden [262,263], dass bei manchen Menschen z. B. eine virale Infektion und die damit verbundenen Symptome (mangelnde Leistungsfähigkeit, Muskelschmerzen usw.) bestimmte kognitive und Verhaltensänderungen aktivieren. So kann die Auffassung, eine körperliche Erkrankung zu haben, die sich durch Bewegung und Belastung nur verschlimmere, zu verlängerter Bettruhe und Aktivitätsvermeidung führen. Die sich bald einstellenden physiologischen Sekundärveränderungen durch fehlende Aktivität (Dekonditionierung)
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This is the most impressive thing about German ME/CFS situation. Even the moronic Danish and Dutch psychiatrists seem to have figured out that the deconditioning theory is so hopelessly clowny, that it only provides ammunition for their opponents. Maybe in a few years they will learn that your garbage psych theory has to be based on the fact that something very complicated is going on in the patients brain to make it at least sound somewhat plausible for politicians and lay people.

Seriously though. That was a terrible read.
 
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lycaena said:
Where ist the puke-smiley? I am especially appalled at the statement of the association fatigatio :grumpy: I quited my membership a few years ago.
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Me inbetween every paragraph

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Guideline:

1. paragraph

CFS is a rare result of a consultation (this is the first sentence!).

A population sample from Chicago showed CFS (as well as other forms of tiredness) was associated with female gender, belonging to a minority, low level of education and low professional status.

Prior to the development of CFS, patients also made a lot of GP visits with variable complaints over many years.
 
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Now they get philosophical.

Guideline:
It's important to mention that with a lot of somatic and psychic illnesses it's very difficult to draw a line between "ill" and "non-ill".

Here it becomes clear that medical diagnoses are ultimately agreements depending on time and location and are determined by social, cultural and bio-medical circumstances and knowledge.
 
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I haven't read it all yet but I think they manage to not use the words illness or disease once.

As in the last guideline they advocate for not informing the public and not raising awareness that this "entity" exists:

"It is questionable, however, whether it makes sense to further deepen the awareness of this entity in the general and specialist public, given the unexplained aetiopathology and the lack of specific treatment options for CFS."
 
They now muse about the "vicious circle of deconditioning (when we're deconditioned and move it's hard and this is why we think we're ill)

Sorry, my head is spinning, so here's an automatic translation:

"It has been postulated that in some people, for example, a
viral infection and the associated symptoms (lack of performance, muscle pain
etc.) activate certain cognitive and behavioural changes. In this way, the
concept of having a physical disorder that is characterized by movement and strain
only aggravated, prolonged bed rest and avoidance of activity. The soon-to-be
adjusting physiological secondary changes due to lack of activity (deconditioning)
confirm these views, which are actually unfounded: Movement leads to
now definitely to complaints, which can be improved by rest in the short term! It's a vicious circle
which in turn leads to evasion, avoidance, social retreat and social exclusion,
depressive mood. These are hypothetical considerations; however, they do make
clearly shows that diagnostic labelling in turn affects the behavior,
be able to have a sense of well-being and ultimately biological processes."
 
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