New German guideline for ME published today

[Dolphin]

There is a thread of tweets on this here:

 

[dreampop]

Me inbetween every paragraph

lmao

 

[Joh]

Answers of the guideline committee to 17 pages with sources, citations

"Explanation" why the definition of "rare disease" doesn't matter. Interesting that they use the word "may", as if it's not clear that it does differ:

In fact, CFS is a rare outcome of consultations. "Rare" and "common" are
defined here pragmatically from the working viewpoint of primary care. This definition may be
differentiate from the official definition of "rare" or "not uncommon" diseases - formulation
has not changed.

See remarks above, points 1 and 2, wording remains unchanged.

See General Reservations above, in particular point 2, wording slightly modified accordingly

This is what they have to say to IOM, NIH, CDC, BMJ etc.:

These considerations constitute an arbitrary compilation of personal opinions and opinions.
and statements and laboratory findings of questionable relevance. No consequences for the formulations
of the guideline.
Some of the proposals have already been included in the guideline (recognition of suffering, individualised treatment and treatment of the patients), procedure, taking into account the needs and abilities of the patient), in some cases we hold the following points for inappropriate (role of "pathophysiology"). Formulations unchanged.

 

[Joh]

The following quotations are from a letter from the head of the Fatigatio to the guideline committee. It's published in the "guideline report".

The Fatigatio is the oldest German organization (since 1993) and much bigger than the others (1600 members). They have let sufferers down a lot in the past and are kind of the German Action for ME (but in an unprofessional way). Unfortunately they're located in Berlin what makes them look kind of important. I'm still a member, because it seemed like the natural choice when I was diagnosed and knew nothing and lived in Berlin, but after gems from them like Gupta, childhood trauma, openly smearing other organizations, recommending in the last media report to stop being perfectionist and just stop ironing and then you should be ok, censoring their forums, going behind the other organization's back in the last guideline process seven years ago - this letter to the guideline committee was what they could muster in defence of ME patients:

I hope that the next few years will shed even better light on CFS, many studies are conducted. I see a lot of things like you, too. In my opinion, the prevalence is too high with 250,000-300,000 sufferers in Germany. You can't use the prevalence numbers of America, especially since there have also been epidemics in America, which hasn't happenend here in Germany. That would make CFS a contagious disease, but I can't confirm that.

No talk of relevant studies or international guidelines, instead this strange collection of how smoking and childhood trauma affects the genes in generations to come:

There is a Dutch study which shows that hunger in the war years 1944-45 at
of a pregnant woman affected the genome of the unborn child. demonstrably
the IGF2 gene produced long-term DNA methylation in the IGF2 gene while it was still present in the human genome
in the case of the siblings born later, with a change in methylation
in the IGF2 gene. http://www.pnas.org/content/105/44/17046.full
Further studies are also interesting, which show that early childhood trauma or stress in the
Pregnancy and environmental pollution change the genes through methylation, in part by
until further generations hiNo. http://www.pharmazeutische-zeitung.de/index.php?id=6438
This is also known in tobacco smoking pregnant women. The fabrics in the cigarette can take the placental barrier
and change the DNA sustainably. https://www.aerzteblatt.de/nachrich...er-Schwangerschaft-kann-fetale-DNA-veraendern

In our association there are many doctors, including human geneticists and molecular biologists. These
conduct and have published their own studies.

(Without any source or further info.)

I also agree with you that deconditioning is not the right way forward. Permanent
bedriddenness ultimately leads to an overall deterioration of the condition and not improvement.
For this reason, the CFS patient should be activated according to his or her individuell strength/energy under medical/therapeutic supervision.

Thank you very much for not putting us in the same pot as many others from the CFS scene. We
would like to discuss on the factual and content level and not on a personal level with self-knitted attitudes and perception.

Apparantly this is supposed to drescribe the other two organizations and the majority of pwME? Funnily enough she's the only one to make it personal.

I'm at a loss for words for this clumsy attempt to flatter the head of the guideline committee. It's painful to read. Again it somehow implies that the other organizations or patients are lacking decency and respect.

Incidentally, I was also born in July (6.7.1958), I read in my CV that you were born on July 20,1951. Certainly this means we have many things in common, including the notion of decency and respect.

http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf
p. 94, p. 95

 

[Joh]

Some of the reactions from German pwME to the new guideline can be read in the comments of this facebook post.

 

[MSEsperanza]

The following quotations are from a letter from the head of the Fatigatio to the guideline committee. It's published in the "guideline report".

The Fatigatio is the oldest German organization (since 1993) and much bigger than the others (1600 members). They have let sufferers down a lot in the past and are kind of the German Action for ME (but in an unprofessional way). Unfortunately they're located in Berlin what makes them look kind of important. I'm still a member, because it seemed like the natural choice when I was diagnosed and knew nothing and lived in Berlin, but after gems from them like Gupta, childhood trauma, openly smearing other organizations, recommending in the last media report to stop being perfectionist and just stop ironing and then you should be ok, censoring their forums, going behind the other organization's back in the last guideline process seven years ago - this letter to the guideline committee was what they could muster in defence of ME patients:



No talk of relevant studies or international guidelines, instead this strange collection of how smoking and childhood trauma affects the genes in generations to come:


(Without any source or further info.)



Apparantly this is supposed to subscribe the other two organizations and the majority of pwME? Funnily enough she's the only one to make it personal.



http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf
p. 94, p. 95

:-(

How embarrassing (in German: "zum Fremdschämen")!
Thanks, Joh, for spreading the information.

Unfortunately, terminating membership in Fatigatio is possible not before the end of 2018, but I already sent an E-Mail, and announced the formal letter which is necessary.

 

[Inara]

I hope more will follow and leave fatigatio, and give their money, voice and energy to other organizations who have proved to advocate for people with ME. I sometimes think fatigatio might be a part of the problem since they transport the message "Everything's fine in Germany" - oh, reminds me of a politician's mantra...

 

[Valentijn]

This is what they have to say to IOM, NIH, CDC, BMJ etc.:

To paraphrase: "Dozens, if not hundreds, of scientists disagree with everything me and my two buddies have said. But they are definitely wrong, because me and my buddies are very SMRT."

No talk of relevant studies or international guidelines, instead this strange collection of how smoking and childhood trauma affects the genes in generations to come:

I would have thought the widespread starvation in the Netherlands near the end of the war would have been more relevant than stress. Reckon they controlled for that?

Incidentally, I was also born in July (6.7.1958), I read in my CV that you were born on July 20,1951. Certainly this means we have many things in common, including the notion of decency and respect.

Yup, that's definitely the arbiters of science, logic, and reason right there

 

[Joh]

I hope more will follow and leave fatigatio, and give their money, voice and energy to other organizations who have proved to advocate for people with ME.

Strangely the letters and interventions from the Lost Voices Stiftung are missing from the "Methodenreport" document. I asked the German Association and they said they have no idea why and that the Lost Voices Stiftung did amazing work and was able to get some sentences slightly changed.
The Methodenreport has many formal mistakes, forgetting to mention all of the interventions of the Lost Voices Stiftung would just be one more.

 

[Joh]

Prof. Scheibenbogen (as head of EUROMENE) is cited only once in the Methodenreport on p. 94. It's strange that they don't show any of her recommendations/interventions.

Thank you for offering to participate in the Delphi process, but my request
was only the participation in the chapter CFS. Here I have seen that unfortunately only a small part
of my suggestions was taken into account.

 

[Joh]

The German Association is the only party involved who has issued an official complaint about the report (the guideline process and the content) at the AWMF. The AWMF is responsible for publishing the report.

 

[Joh]

It's so sad. I posted in the only German forum about the guideline yesterday and not a single answer so far. People should be enraged but they don't care. We don't have a patient movement/opposition in Germany. I think the first step is that we need more diagnosed people (my guess is that far less than the internationally estimated 10% are diagnosed here). I would have loved to to advocacy work earlier (and outside my bed) if I had known my diagnosis.

 

[Skycloud]

Well I'm thankful I was born in July too and can also lay claim to the notion of decency and respect .

@Joh - this thread is an eyeopener for me regarding what you are up against in Germany - thank you. I hope there's some way those of us not in Germany can support pwme there.

Tragic.

 

[Trish]

''Incidentally, I was also born in July (6.7.1958), I read in my CV that you were born on July 20,1951. Certainly this means we have many things in common, including the notion of decency and respect.''

That is totally bizarre. Harry Potter was born in July too, and he conquered Lord Voldemort and saved the Wizarding world, so there's another example to prove you are right.
Oh, sorry, I forgot, Harry Potter is a fictional character.

 

[Inara]

It's so sad. I posted in the only German forum about the guideline yesterday and not a single answer so far. People should be enraged but they don't care. We don't have a patient movement/opposition in Germany. I think the first step is that we need more diagnosed people (my guess is that far less than the internationally estimated 10% are diagnosed here). I would have loved to to advocacy work earlier (and outside my bed) if I had known my diagnosis.

I know that forum, too, as you know I invest my energy here, it's a much nicer place. I am not surprised though. There once was a time when a hot discussion would have started, see an older thread about the previos guideline. But today, there's a certain agenda/ideology (alternative treatments, psychology); I am always sad for new people that come and who seek for help and get "eat healthily, do psychotherapy, do sports" as advice.

I totally feel like you - I want enrage. We need it. There is no opposition. That's why the DEGAM can act like God. The German Association chose some paths, but they can't be everywhere. The same holds for Lost Voices. I don't know how that can be changed. We need money. We need people.

 

[Joh]

I know that forum, too, as you know I invest my energy here, it's a much nicer place. I am not surprised though. There once was a time when a hot discussion would have started, see an older thread about the previos guideline. But today, there's a certain agenda/ideology (alternative treatments, psychology); I am always sad for new people that come and who seek for help and get "eat healthily, do psychotherapy, do sports" as advice.

I totally agree but I think you mean the Swiss forums (symptome.ch) and I meant the German forums (cfs-treffpunkt). But it's the same in both forums. No mention of the new guideline in the Fatigatio forums by the way (members only).

ETA: In the meantime people answered in the German forums and think it's positive that bedridden patients should be activated and that the guideline is ok.

 

[Inara]

I totally agree but I think you mean the Swiss forums (symptome.ch) and I meant the German forums (cfs-treffpunkt). But it's the same in both forums. No mention of the new guideline in the Fatigatio forums by the way (members only).

Ah, yes, the swiss one is more hostile. The German one...well...doesn't surprise me at all. No action there, people seem to be happy with how it is.

ETA: In the meantime people answered in the German forums and think it's positive that bedridden patients should be activated and that the guideline is ok.

What????
Maybe that's the core problem? That Germans with CFS do think CBT and GET are helpful? And that they don't see a change is needed? I was suprised about how willingly psychological diagnoses were accepted - complete opposite in UK, by the way - maybe they believe ME is psychological?

 

[Philipp]

Don't be so discouraged about the answers on the other forum. It is literally one nice & young girl who just likes to see the best in people, probably a couple of people who just don't even know what to say and there are really only like 10 regular posters over there. We don't have a real German forum for advocacy or actual discussions for the most part and I do not know if we can turn that treffpunkt site into one - maybe it's best we just have our discussions here where everyone from the larger community can watch what happens. Maybe we can get the couple of productive people over here. Not even worth talking about the Swiss forum, it is probably safe to completely ignore it. Moving on...

...is there anything about this guideline that can be challenged legally under any law whatsoever? Do we have anything this document might fall under? Anything at all?

 

[lycaena]

I know it sounds stupid because I volunteer for the German Association and like an advertisement. But it's rather the other way around and I chose them because I value their evidence-based scientific approach.

I would recommend to check out the letters from the German Association to DEGAM in the guideline report from page 74-90. I think they did amazing work. One of the two people who did the guideline work is healthy (with a family member with ME) and did all the work as a volunteer parallel to a full time job:

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

@Joh Thank you for your commitment! I am glad this new association was founded last year!

 

[Inara]

is there anything about this guideline that can be challenged legally under any law whatsoever? Do we have anything this document might fall under? Anything at all?

My thoughts, @Philipp, as you might guess

I am certain things can be done in that direction (although my lawyer meant, concerning Degam, she doesn't see a possibility), as I mused on the other thread. Do you have ideas about fundraising? Legal steps are costly, and I can't do it with my resources alone. The German association wasn't very interested, maybe because they have their own projects and limited finances.

And thank you so much for your words concerning the German forum and about not giving up! I won't! I feel this place is much better suited for any discussion.