Guideline "Tiredness" by DEGAM

Thanks @Philipp, but I wasn't involved in this process! Most of the work was done even before I started to volunteer and all the letters written without me. I just happened to see the BMJ report on the first day it was published but I think that was the only source I contributed. (Apologies if I made it sound otherwise, I edited my post above). I just meant that when it comes to scientific evidence, the DEGAM has seen it all.

I have many thoughts about advocacy, maybe we could also write in German some other time. At the moment I should put my energy rather in the appointment with a government doctor I have to attend on Monday and who will decide if I'm faking and the fact that I lost my illness insurance last week. Sorry you were not doing so well, I hope you're a little better.

(Edited, sorry, brainfogged)

 

Ok so maaaaaybe you weren't the one writing those couple of letters but you are the one with the NGO-background/experience we need and who is informed of everything that's going on, so, you know, that's pretty useful anyway

I'll invoke the ancient ritual of violently crossing my fingers for you on monday. I hope you'll have all the strength you need for that encounter when the time comes.
Don't worry about me, it was just a random episode of being brainless for a couple weeks, we've all had worse

 

Thank you very much for crossing fingers! And I'm also still going to answer your nice birthday wish and the others, I'm just so slothslow (that was supposed to be a very slowly moving gif, but didn't work). By the way I asked another Philipp on a German forum if he is you a few months ago but he wasn't.

On the topic of this thread, I check the page for the new guideline tiredness every day and am happy that it hasn't been published yet (it was supposed to be published December 31). It's unclear if that has anything to do with any ongoing complaints or if they just think tiredness is not important enough (as it's officially "expired" since 29.09.2016 and no one cared).

 

Hi @Philipp, I guess I understand your idea with VdK/SoVD better...It's not so bad, I think. When would you say could be a good point of time of contacting them? Do you know someone there?

Let me collect what we have so far:

• Probably contact VdK/SoVD. When and with what?

• 278 StGB is an interesting matter. I was told lately that intend is needed in odder that this is fulfilled.

• In order to be called an expert in a field, appropriate proofs of this expertism is needed. Maybe we need more info about that? (Question: Does Degam fulfill this? Is this relevant?)

• There is the German Association for ME who tries to sort things out wrt. AWMF (Degam), DIMDI (ICD-11).

Is it really true you can't complain as individuals? Maybe you can't be part of the process?

I need to dig deeper into how IQWIG works and how individuals can make suggestions/applications. There was something...

I thought about contacting DIE LINKE and asking whether they know how many ME pensions applications were refused and how many people applied with ME and were granted pensions with 'depression' or 'somatoform disorder' (possibly after Reha). Maybe they know? As a private person I certainly won't get information about this from the DRV, or would I? I could contact them. Possibly you would need to be a journalist to get that info.

Does anybody know if we have something like a FOI in Germany?

 

Dear @Joh, I wish you all the luck of this world! Oh gosh

As soon as you are willing you could write about your advocacy ideas.

I don't want to be a spoiler here...
It is a very important part that the German Association put their efforts in advocating for ME. But we shouldn't think that's enough. The "Bündnis for ME" was very engaged, too, in the past, with some successes. But alone, you won't bring the change.

We need to be active on different fronts. I don't think that individual action is useless.

What brought on a change in the UK was the repeated and tiredless critisization of PACE and its authors, not the patient organisations. At least, that's my impression. (In the US though, some ME patient organisations are pretty influential wrt. politics.)

The question is: Where can we in Germany be constant and tiredless? I think everybody can contribute a little; all the small stitches will maybe lead to a change. I don't know...

 

I found something interesting today. Don't know whether it can be helpful?

Original source is a comment by Sophie Schulz here http://www.badische-zeitung.de/gesundheit-ernaehrung/cfs-die-unbekannte-krankheit--45584603.html.
I searched the sources she mentions.

There is a letter from Bundesministerium für Arbeit und Soziales:

http://www.csn-deutschland.de/BMAS-Anhaltspunkte.pdf

Reference is the health care provision, paragraph 2, 18.4 (https://www.google.de/url?sa=t&sour...vD-kQFggnMAE&usg=AOvVaw2LryYbaqys6pC0WNq0fRje)

Here is the decision by the Bundesrat:
https://www.bundesrat.de/SharedDocs...yString=Drucksache+891/09&cms_fromSearch=true

Maybe this may be relevant? And maybe this is the reason why some BPS people say it's a physical illness with a psychological component (see e.g. Henningsen)?

 

Well, if we have to actually prove intent for §278 it will be really hard to ever get anyone sentenced under it as 'I am a moron and all my colleagues are morons, we don't really mean anything by it' is hard to disprove as a defense from and outside standpoint. Being dangerously incompetent and being dangerously psychotic has roughly the same effect on the output produced here. So there go my dreams of locking up the entire MDK I guess.

I do not think it is even possible to contact the VdK directly with regards to our problems. If we have a case which is somewhat representative for most of our problems they can be asked to do the entire legal representation through to the highest court, and for this to be effective we need to a) have the right case and b) need the opposition to fight us on this case every step of the way. It may be useful to simply mention our general situation without appearing too pushy if you have appointments with them so more and more people working there have at least heard of the problem, but I very much doubt they as an organization will opt to spend the money on 'us' if we try this before we have reached the 'critical mass' point of public perception where we are mentioned along the HIV-crowd in the same sentence.

The problems we face with proving that people involved in the degam process are not experts are the same our British friends have with NICE. The people working on these guidelines call themselves experts and no one, especially among other parts of the medical field is even really aware of how bad those people are at their jobs. I fear we may have to start by discrediting our own national BPS brigade based on their shitty work, but it may be harder than in the UK since there is no healthy culture of discussion in our country (in my opinion at least). We could do with some more real professors of medicine apart from the one we have...

The FOI thing is interesting, especially if we could get a mainstream journalist interested in our problem. I know absolutely nothing about this however and the question of relevant data comes up naturally, as in 'what do we even want to ask for' in order for it to be useful to our cause. People not getting pensions for ME/CFS can simply be an artifact of people not being correctly diagnosed enough. That is something a journalist can mention, but it is not something we can blame the DRV for in a vacuum.

Hmm... so maybe we have to find out how to discredit the bullshit arguments Henningsen et al propagate effectively as soon as we have found out more about the legal framework around which they operate. It is just so hard to argue against people who are not based in reality within their own realm of insanity, so maybe this can take the route of where they have to go to their default of making everything ad hominem & refer to authority again where all they have to say is that patients are against psychiatry in general while the argument is completely devoid of any substance at all. It is hard to jump from this theoretical angle of attack on crappy theory to a concrete case of those lunatics not influencing policy anymore because of it, though.

@Joh I'm not really active on other forums, I just occasionally skim them. If you ever need anything from me just PM me here in any language you like

 

You know, @ Philipp, what is really hard for me to understand, too, seems to be the fact we cannot do anything legally. I just can't believe it. I just can't believe you can't do anything concerning this:

You are absolutely right.
In general, in law, not-knowing doesn't save you from being sentenced. So maybe 278 is not applicable, but something else?

What were your dreams concerning the MdK? We shouldn't give up too easily. Maybe there is a way.
To prove intent wrt. MdK, we could need a whistleblower; or an investigative journalist; or any experience stories.

To work on several fronts could be promising. The German Association is on important fronts. We can add more.

The foundation of the re-analysis and critisization of PACE was a legal process; the authors would have never released the data without that (which, in fact, is a disgrace).

In this thread I realize I have many questions concerning the law.

Concerning Degam: They're a General Practitioner's Organisation. If you look at the authors, if I remember correctly, they are (Professors) General Practitioners. So they are no experts; on no area, strictly.
The BPS folk in the UK can claim they do research on CF(S). The Degam can't do that. The Degam strictly ignores other publications and only references to the BPS publications. That could be attacked. Because, as the Bundesrat said, actual scientific publications and ongoings have to be considered. Which, obviously, the Degam and the S3 guideline don't do.

Yes! Let's think about where we could start.

That's my opinion, too. Also, we need courage, especially to be unpleasant.

That one is difficult. Of course, there's Prof. Scheibenbogen; she already is pretty engaged. Then there is Dr. Bieger - who spoke up for ME in the past, e.g. regarding Degam - then Prof. Huber, who showed willingness to help (both aren't reasearchers, but maybe that's not needed), and I know Prof. Stark who is a psychiatrist, but he says ME/CFS is a physical illness, not a psychiatric one.

I wanted to contact Mr. Henningsen as soon as possible, see here: https://www.s4me.info/threads/discussion-promoters-of-bps.2043/#post-36732
I want to check out the legal frame here, too.

Please don't laugh at me: Mr. Gysi is a lawyer, and he is known to run legal cases to change the political milieu. He has an office in Berlin (with two partners); one of the areas is medical criminal law. I thought about that...(There's also another lawyer who is quite competent...)

The BPS people operate in the political frame, I'd say comparable to the UK. I think we have to consider that. One also has to understand that we have the "Roman Law"; and obviously, as in the UK, the political field stands behind the BPSers.

I will try to keep that in mind. That's a question to ask.
How do we get a mainstream journalist? It would be major.

That's a tricky one. Since ME is diagnosed with clinical symptoms - as is depression and so on - every other doctor can say these symptoms are due to a psychiatric disorder. So a psychiatrist might say "It's psychological" and another doctor says "it's ME". It's a little bit like word against word. In a way I will see how that one will end legally (I have an ongoing case).

Sure you can the blame the DRV. They choose the surveyers. If you apply with an ME diagnosis, why are you sent to a psychiatrist and not to an ME expert?

By the way, in my opinion it is absolutely ok - and needed - to go against psychiatry in general. And I personally do. But I understand that maybe ME advocates can't do that and that both topics - at this point - need to be treated distinctly.

 

Just a couple quick thoughts:

- Gysi may actually not be the worst idea anyone has had today, especially if he is involved himself (not just running the agency) and understands that this whole mess and the possibly criminal inaction of our government exposes his life-long political adversaries. He is actually the kind of guy who is important enough that a whistleblower/journalist/other form of angelic being might get interested.
- The clusterfuck about the entire discussion around psychiatric & physical origin is, in my opinion, orchestrated to draw attention away from the actual reality of the illnesses that are being discussed. As far as I have understood the laws around this, usually it does not matter whether or not symptoms are seen to be of physical, psychological or magical origin, but rather how disabling they are and what the expected disease progression looks like. Depression can be a very, very serious illness (depending on severity in the individual) and for most cases it matters how disabling it is and how little can be done about it. In practice, this is ignored in court rooms due to the stigma that anything psych is due to patients not trying hard enough to simply not be sick anymore. If we debunk the psychiatric stigmatization, this angle of attack goes away as the meaningless and disgusting victim blaming that it actually is (apart from the exclusionary clauses insurance companies use). The actual problem is proving how disabled one actually is and that this is not likely to change with any treatment, which is very hard to do. Maybe we can come up with something here down the road - when is your case due btw? Is it with the DRV? Good luck anyway, I hope justice prevails for once...

 

Thanks @Philipp, that is very constructive!

I seriously do consider to contact Gysi's office, BUT I am not sure whether he is the right person (he and his colleagues are into the (medical) criminal law...) and I am certain he does take a lot more than 300€ or so per hour. Hm...

I came across this document,
http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
and this one,
http://www.margaretwilliams.me/2014/uk-governments-three-pronged-strategy-for-cfsme.pdf
Both are probably already known.

I cannot say if everything that is said there is true (it probably is because there are similar statements from Germany), but if it is, one could speak of a "conspiracy" against ME, which has to be challenged. It would be good to collect documents that prove this. I think about contacting patientenlobby because they have lots of information about this.

IQWIQ writes about "Chronisches Müdigkeitssyndrom":

Please note, IQWIQ writes "Müdigkeitssyndrom", not "Fatiguesyndrom" (müde = tired)!
IQWIQ's statement is the opposite from what the Bundesrat said about CFS.
I can't see the political role of IQWIQ, due to this:
https://www.bundesgesundheitsminist.../g/gemeinsamer-wissenschaftlicher-beirat.html

Here is something amiss.

Here is an article about the topic: http://www.cfs-aktuell.de/dezember10_3.htm

I also found this:
https://www.google.de/url?sa=t&sour...FjAAegQIERAB&usg=AOvVaw36WMytUJYrVDRlTKmYIirv

A very good point. What matters - at least to me - are the consequences if a judge chooses the psychological path.

That's my goal on a political level. I can't work to find a biomarker, so I need to choose what I can do. But let's be honest: As always, it fails due to money.

My case is ongoing. It's about false treatment/diagnosis. Seems nobody has done that before wrt. ME in Germany. At this point, it's only the preamble, i.e. the MdK writes an expert opinion (that will be funny!) and the doctor's insurance company checks the case. - Just saw this is a public forum, so I better won't say more.

The DRV is another case. I have handed in an application, so now it gets "hot".

 

The guideline tiredness was published today. I guess we can open a new thread for that. The AWMF site says it's still in process, but the DEGAM site has published it.

Have to read the whole report yet, I'm just so upset and don't know if I can take it. Looks as horrible as expected at first sight.

The statements from the Deutsche Gesellschaft (that is called "self-help-group", what it's not) can be read from page 73 to 90 I think. The Deutsche Gesellschaft was forgotten in the list at the beginning, Herr Musch from the Deutsche Gesellschaft is listed as speaker as the Bündnis ME/CFS and the second person from the Deutsche Gesellschaft isn't listed at all. DEGAM can't even get the basics right.

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

I'm used to a lot of bullshit from the Fatigatio, but after I read just one of their statements I'm fuming and will terminate my membership at once. Pseudoscience, distancing themselves from the "CFS-scene", and the recommendation that bedridden patients should be activated. They're truly the German Action for ME or worse.

 

Made a new thread to discuss the published guideline: https://www.s4me.info/threads/new-german-guideline-tiredness-published-today.2202/

 

Thank you, @Joh!

 

Can you reference to what they said? Seems the connections to the BPS group is correct, at last.

Edit: I see you did on the other thread.

 

Page 94/95: http://www.degam.de/files/Inhalte/L...denreport/053-002_Methodenreport_30.01.18.pdf

It's just zum Fremdschämen what the head of the Fatigatio writes. "I'm also born in July, as you, so I'm sure we have the same moral values..." (p. 95) Seriously? Not even the same year, "I'm also born in July"? Is she kidding us?

She manages to throw the patients and other organizations under the bus and to embarass herself at the same time in a few sentences.

 

Well said! I had absolutely the same thoughts about her July-joke.

 

Perhaps someone should ask what star sign is considered propitious for treatment.

 

I am way behind on my forum reading, and have only just seen this. I too must face the sad realisation that I am the German equivalent of an AfME member. My main contact with other sufferers is this forum (S4ME). In Germany Fatigatio was the first society I found, so I joined it. I go to their self-help meetings a few times a year and meet other sufferers.

However, reading the comments of the head of Fatigatio is indeed zum Fremdfuckingschämen. I do not want another penny of my money going towards that organisation (subscription is about 45 euros a year) and shall resign forthwith. It's a shame because I go to the local group meetings where they have elected me treasurer (I'm the only one whose brain works well enough to do the numbers) and I'm a leading bigmouth who tells them all about pacing and stuff (no surprise there). I'll write to my local group and tell them why I'm quitting. If I'm still welcome as a non-paying lay member I might continue still going, I've met some nice people there.

But it's a no-brainer, having read the appalling comments from Fatigatio on page 94, and contrasted them with the comprehensive comments of the Deutsche Gesellschaft für MECFS from page 72 onwards. I suppose I'd better get in touch with them and ask if they want a new member.

 

By the way, for our English-speaking readers, "zum Fremdschämen" means to be embarassed on someone else's behalf, like when your husband farts in company or something. The head of Fatigatio has just behaved in an equivalent manner.

 

Respect, @TiredSam, for your decision regarding fatigatio, especially taking into account that you go to self help groups regularly.

Can you tell what people there say about the situation in Germany?