International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Dire new German guidelines for ME.

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Feb 2, 2018.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,750
    Likes:
    19,388
    UK
    This document which I believe was produced this week is the German effort to explain ME and 'tiredness' , and its treatment.

    http://www.degam.de/files/Inhalte/L...ssung 2018/053-002l_Muedigkeit_neu_180121.pdf

    I understand it is dire! Can our German speakers translate the most relevant parts for us.......if it doesn't depress you too much?

    It is written by a tiny group of authors who, I am told, insult the suffereres of this devastating disease with alarming alacrity while the name 'Wessely' litters the references and no serious science is quoted.

    I think we need to send a few boats across the channel for our German members as they would be better off in the UK..................unbelievably.



    [​IMG]
     
  2. Sundancer

    Sundancer Senior Member

    Messages:
    364
    Likes:
    774
    Holland
    I can read German, but translating to English would be too much.

    the ever returning point is that those people who come down with it have psycho-social problems, often from childhood on.

    what I do not get, as a child-psychologist. That scientists and doctors do not see that when you have an unsafe childhood. You live with constantly heightened cortisol levels. this has its effects on first gut, the immunesystem and so on. these are simple facts. That's the Bio part of BioPsychoSocial.

    A bit further, it is known ( although it was not not explainded during my education, relatively recent) that children born of mothers who suffer from psychological stress during pregnancy, bear children who have a heightened risk to behavioral problems.

    I know that there has been research on mice, whereby it was found that babymice from stressed mothers had less evolved stressregulating systems then there counterparts who had moms with no stress during pregnancy. here epigenics come into play.

    furthermore it has long been known and proved that depression (and in it's wake anxiety, they're closely related) has a clear genetic ( or epigenetic ) source, and gets triggered by too much stress.

    the BPS model is not bad But they cut out the Bio part.

    sorry, this has nothing to do with your post, I got shooting of my anger.

    yes, the little I did read of it doesn't bode well for german patients. I fear the new dutch protocol, should come in some weeks...
     
    Joh and Countrygirl like this.
  3. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Thank you much for your interest! I meant to start a thread and am happy to see it was already done.

    The new German "guideline tiredness" was published two days ago and is horrific.

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

    The chapter on ME or "chronic tiredness syndrome" as G93.3 is officially named in Germany starts at page 40:
    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
     
    TreePerson and Countrygirl like this.
  4. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    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 very good statements from the German Association can be read from pages 73-90.
     
    PinkPanda and Countrygirl like this.
  5. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Countrygirl likes this.
  6. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
  7. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    I read somewhere that Google Translate can also be used for pdf documents? I'll try to check it out.

    The guideline is pure BPS or worse, it basically says ME doesn't exist. The word disease or illness isn't mentioned. The first sentence says that it's "a rare result of a consultation". Philosophical musings that it's hard to draw a line between illness and non-illness and further musings on that diagnoses are only "agreements" depending on time, place and culture. Deconditioning, fear, vicious circle. Of course CBT and GET. Tiredness is the only symptom mentioned. ("Fatigue" is a medical term in German too, so it could at least be used. The usual focus on fatigue is bad enough, but we're not even fatigued but just a little tired.) The whole guideline focuses on psycho-social explanations. Testing is bad, diagnosing is bad, the name ME is especially bad. Basically ME and CFS don't exist.

    And no awareness should be raised and doctors not be informed: "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."

    If it's ok to link to another forum, I've translated some of it here: https://www.s4me.info/threads/new-german-guideline-for-me-published-today.2202/
     
    Last edited: Feb 2, 2018
  8. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Yes please! :)
     
    Countrygirl likes this.
  9. Sundancer

    Sundancer Senior Member

    Messages:
    364
    Likes:
    774
    Holland
    It is only since about December that I'm able to get on the internet and read. It's totally baffling me. This farce, the way severely ill patients are put in a corner as if were being naughty children.
    I've always thought that it was just my bad luck to get such doctors...decided 15 years ago that I will not go to see any specialist doctor anymore, the only thing they do is hurt me.

    and about the prevalence,
    well, i'm not part of a minority and not lower educated either. Looking around here, there are some pretty smart patients with ME around.

    smarter then those ' doctors'
    i find it makes me angry and sad.
     
    alkt, Soup Dragon, Joh and 1 other person like this.
  10. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    For anybody interested, just a few spontaneous thoughts on the situation in Germany. In no particular order and of course not complete. :)

    The situation is pretty bad (as in all countries). We've also children taken from families (Nigel Speight compared one case of a German girl with very severe ME who was held hostage and tortured in a German university hospital for two years to Karina Hansen) and we also have the diagnoses of Münchhausen by Proxy (or FII) and Pervasive Refusal Syndrome. I know of at least one family who's under the thread that the child is taken away right now. The situation for children is especially dramatic, we don't have a single place or doctor (that I know of) where children can be diagnosed and no publication in German on pediatric ME. In addition there's a German law that home schooling is not allowed and children have to turn up at school (parents can go to jail over this).

    We don't have a single ME or fatigue clinic (I know they suck) and are referred into the psychological system and sent to psychosomatic clinics and psychosomatic rehabilitation centers and treated in groups with people with mental illnesses - what means that the approach is being activated and exercising and getting rid of your fantasie of having an organic illness.

    We don't have much info on ME in German and rarely up to date info. When I ordered the German equivalent to the MEA's "purple book" for GPs last year it had 16 pages and 4 of them were still on XRMV (as it wasn't updated in 7 years)!

    Someone said about the German guideline that in regard to Gandhi's saying (first they ignore you, then they laugh at you, then they fight you and then you win) the US, UK and Norway are in the fighting phase while in Germany ME is still being ignored. I thought that was quite fitting. When I was diagnosed in the Charite they told me that Germany is 10 years behind the UK.

    The language barrier is a huge problem (everything is in English). A lot of German patients have never read the IOM report or David Tuller or PACE and so on. A huge chunk of time and energy from organizations and volunteers go into translating things (of course not the IOM report of the pediatric primer but shorter stuff).

    What we need is a patient movement and in theory we should be 50.000 more pwME than in the UK but nobody is diagnosed. So the organizations don't have members and there's no active opposition. Just as an example: the ME Association has a following of 11.000 on Twitter and other UK organizations have similar numbers, the German Association has 130. So far we had two screenings of Unrest and one Millions Missing event and zero Euro government funding in Germany ever.
     
  11. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,750
    Likes:
    19,388
    UK
    Thank you for explaining the situation @Joh . It does sound as if it is even worse than the UK :cry:......................I think we had better send a few more boats for you.

    Dreadful!
     
    Sundancer and Joh like this.
  12. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Sundancer and Countrygirl like this.
  13. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Someone translated parts of the guideline into English in these tweets (much better than I did). If you're interested you can click on the tweet and the whole thread should open.
     
    Sundancer and Countrygirl like this.
  14. Cheesus

    Cheesus Senior Member

    Messages:
    1,278
    Likes:
    5,942
    UK
    Urgh that is even worse than Chronic Fatigue Syndrome.
     
    Joh, Sundancer and Countrygirl like this.
  15. Sundancer

    Sundancer Senior Member

    Messages:
    364
    Likes:
    774
    Holland

    thanks for posting about the situation in Germany, we might send some trains from Holland too. I've printed and read the protocol for CFS in the Netherlands, were awaiting the new one.:nervous:

    at least here it is a condition that is recognized, called a physical illness with no known etiology. Sadly they then say that neither medication nor supplements seem to do any good and advise CBT/GET as ' benign interventions' . Patient-association have read the text and their comments are added to the text.

    but I know that many doctors think it's all in the head. I'm very grateful with my new GP who takes me serious.

    Money for research has all gone to CBT/GET ( by having a psychobabble figure on the committee) but I know there were applications for real research too.

    One of our ME doctors has been kicked out of his profession, he's now doing research, I think with private funding.

    In Belgium there are two ME doctors before the judge, both for things financial...
    and we had professor MAes here, he has gone to Australia ( I think), his work is probably more appreciated there, he got laughed at here.

    still, I had my first bout of bedridden at 16, the second at 39 and the third at 52. And no doctor ever gave me a name for this condition. Only now, searching for answers i've diagnosed myself as having ME.

    How to get a patient-movement when patients do not get a diagnosis? a name for their illness. When you have a name, you can go looking on the internet.
    But then, if there almost nothing to be found in German you would not get much further either.

    I just do not get the stubbornness of those people, it is a difficult illness, but the clinical picture is pretty clear to my eyes. Especially in patients with sudden onset.

    were does the stubbornness come from? Why do doctors not want to see what is so easy to see??

    sorry, just rambling, venting my anger :mad:
     
    alkt, Joh, Countrygirl and 1 other person like this.
  16. Soup Dragon

    Soup Dragon

    Messages:
    13
    Likes:
    39
    I feel so sad hearing about the dreadful situation in Germany. :( My degree was German and Philosophy and I spent a year in Germany just before I became ill (a long time ago now). The country, language and culture are still very close to my heart.

    Does anyone know if the IoM report has been translated into German? I take a copy of the short(ish) summary with me when I go to any appointment with a new doctor and it can be helpful. But it would take a German native speaker with excellent English and some medical knowledge (or a jolly good dictionary!) to translate it, and I know you guys are short on resources.

    If you could get some info on good quality biomedical research to some top medical people and government officials, it might make them start to think about it a bit more carefully, especially if you expressed a regret that Germany is falling so far behind the US in this area! :) For example, in America they've recently stopped recommending CBT/GET, so how come Germany is recommending them at this point?

    My German friends: really sorry you're having to go through this! We'll get there in the end, but it must seem very dark there today. :heart:
     
    alkt, Joh, Countrygirl and 1 other person like this.
  17. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    It hasn't been translated, not even the short version.

    The German Association for ME/CFS did really amazing work, that you can read in the "Methodenreport" from p. 74-90. They did exactly what you propose and cited NIH, CDC (that they took GET from website), BMJ, IOM, all international research, the international critic on CBT/GET etc. That were months of hard work from volunteers and the guideline committee mostly answered with "unanimously rejected".
    http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf

    Thank you!
     
  18. Stretched

    Stretched Senior Member

    Messages:
    378
    Likes:
    381
    U.S., Southeast
    @Sundancer <<when you have an unsafe childhood. You live with constantly heightened cortisol levels. this has its effects on first gut, the immunesystem and so on. these are simple facts. That's the Bio part of BioPsychoSocial... .>>

    This makes total sense. It’s a shame an interpretation of this gets all convoluted when discussing ‘phylological bases’ and gets completely dismissmissed... .
     
    Soup Dragon and Sundancer like this.
  19. Joh

    Joh Inactivist

    Messages:
    842
    Likes:
    4,926
    Germany
    Yep, we have to fight to at least be called fatigued. ;) The Charite sent an application two years ago that we can at least be called chronic fatigue syndrome in the German ICD-10, but it was rejected. It's ridiculous, others fight about if it should be called CFS/ME or ME/CFS or ME and that this disease is not about fatigue with their governments and we have to fight to get the horror name CFS and explain that fatigue is not tiredness. Our next chance for an application is in March. :)
     
    mari_gold, Sundancer and Stretched like this.
  20. Stretched

    Stretched Senior Member

    Messages:
    378
    Likes:
    381
    U.S., Southeast
    Maybe change CFS to something more germane and simple, e.g. CSA = Chronic Systemic Atrophy, or CSM = Chronic Systemic Malaise
     
    Last edited: Feb 2, 2018
    Joh likes this.

See more popular forum discussions.

Share This Page