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Dire new German guidelines for ME.

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

  1. Joh

    Joh Inactivist

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    Hi @Sundancer, I enjoy your ramblings, just too tired (ha) to post much more tonight. I live close to the Dutch boarder and am very interested in the situation in the Netherlands regarding ME. I'm unbelievably impressed by the superactive patient community in the tiny Netherlands. If I remember correctly you have about 40.000 and we have about 300.000 ME patients? And the Dutch activists organize Unrest screenings (even with David Tuller and Dr. Shepherd), Millions Missing, translate everything (even the long Davis Tuller articles) and manage to get ME in the media.

    Exactly! I've always done activism (in other areas) and would have loved to advocate for ME if I had gotten a diagnosis earlier (and could have advocated from outside my bed). It took 14 years until I got a diagnosis, so I was excluded from this great community and felt very alone and desperate, while my life was falling apart and I didn't know why. Now I can put all the anger, frustration and sadness into productive advocacy from bed and volunteer for four groups and on my own. So yes, I agree we need to get people diagnosed to get a patient movement. And to get them diagnosed we have to get the information about ME out.

    By the way the guideline tiredness named three other guidelines they relied on and one was a MUS guideline from Dutch GPs. ;)
     
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  2. Diwi9

    Diwi9 Senior Member

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    Quatsch!
     
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  3. Sundancer

    Sundancer Senior Member

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    mudigkeit...Its plain denigrating

    When you work with unsafe feeling children your first objective must be to try to create a safe environment, next try to help them build some selfesteem. That, to me is the order of things. And I am a psychologist... I'm deeply ashamed that ' colleagues' of mine lend themselves for such ... abuse.

    Psychologists have gotten themselves ( and, most empathically, their patients) in the trap that CBT solves everything. It is a good sort of therapy but gets misused.

    I know several persons with severe depressions, who do a combination of AD and CBT, they do not get well and have the same sort of trouble as we have. They feel guilty for not being able to overcome it, or they start to believe that they have a serotonin shortage.

    all of these persons ( acquaintances of mine) are abused and/or sexually abused/raped in their childhood. Psychology seems to have gone crazy.

    I would like to call it Ramsay's disease, I'm finished with all those strings of capitals.
    Would that i could help the my German neighbors, they are even worse of then Holland or UK
     
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  4. Stretched

    Stretched Senior Member

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    This thread promptrf a Lightbulb: Apply Biopsychosocial (BPS) abuse model to GWI (PTSD), which Klimas parallels with CFS and you get a reasonable basis for examining non-viral CFS causation.

    GWI fits the BPS abuse model, accelerated. IOW, look at the symptoms of BPS abuse over time and you indeed get similar symptoms to the otherwise accelerated symptoms of GWI and CFS.

    I’m curious if she has thought along these lines in modeling her GWI and CFS similarities? It certainly seems to take the viral component out of the equation (which hasn’t solved anything as yet) and focuses on the immune system gone haywire, ergo the HPA axis dysfunction.
     
    Last edited: Feb 2, 2018
  5. Soup Dragon

    Soup Dragon

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    That's awful. :( It sounds as if you're doing all the right things but people are not yet ready to listen. One day they will, and let's hope it's soon.

    I read something today that made me smile. I was looking at an article about Stanford University and noticed that they have a German motto: Die Luft der Freiheit weht*. Stanford is where Professor Ron Davis's extraordinary ME research project is based, so perhaps that motto will turn out to be prophetic for all of us! :)


    *The wind of freedom is blowing.
     
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  6. MartinDH

    MartinDH Senior Member

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    Congratulations Germany. Another reason why "the good old nation" will be the loser in a few decades. Arrogance and ignorance kill research and progress... the paper is full of fallacies. I have to question the author's intelligence.

    In the last weeks I often had to think "If me as a lawyer worked like these docs, then I would have lost my job right from the beginning"... following the slogan: "I don't know the answer to your question but I thankfully know the answer to another - non-asked - question, so let's just take this one!"

    I just want to spit in their faces when a biomarker has been found. Does anybody have any idea how to help the situation of patients in Germany?
     
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  7. Sundancer

    Sundancer Senior Member

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    I read, think on twitter, that they have need of translators.
    their association is very small because people do not get diagnosed, do not know how to find each other

    that smallness also means that not enough people are able to translate English research into German.

    I promised that as soon as I'm able I'll start to translate to dutch but my German is not good enough for translating.
     
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  8. Joh

    Joh Inactivist

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    Hi @MartinDH, thanks for asking!

    I think the Deutsche Gesellschaft für ME/CFS is awesome (newly founded 2016): mecfs.de. I volunteer for them and one can help by becoming a member (25 Euro/year) because without members it's difficult to be heard (the first question mostly is: "How many people do you represent?"). You can check out their great work against the guideline tiredness in this official "Leitlinienreport" from page 74-90: https://www.s4me.info/threads/millions-missing-may-2018-in-germany.2357/

    Then there's always need for people who do translations, write articles, offer their skills whatever they may be. It would be great to organize another Millions Missing on May 12 (international ME day) and I'm trying to find pwME who are interested (https://www.s4me.info/threads/millions-missing-may-2018-in-germany.2357/). Also Unrest screenings are perfect for raising awareness (so far there were two in Hamburg, one is in Berlin on the 22. and more are planned).

    The Lost Voices Stiftung also does great work. Fatigatio is a lost cause.

    :hug:
     
  9. mari_gold

    mari_gold

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    @Countrygirl some boats are not enough, I fear :( Maybe even build another Chunnel...
    Thanks @Joh for posting some details about the new German guidelines and the German ME/CFS reality in practice.
    @MartinDH so true what you wrote ... and really sad. A friend and I also made comparisons with reference to our work and jobs, yes, definitely, if we would work like that... unbelievable...
     
  10. mari_gold

    mari_gold

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    Hi @Joh and @MartinDH,
    I also wanted to mention the thread in the https://www.s4me.info forum. You are so fast Joh :)
    Yes, MartinDH, go for the German Association for ME/CFS! It's definitely a good thing!!!
    On the Unrest page there is also a filmscreening in the South listed (Freudenstadt, black forest region, I think). It's probably without Q & A but it's a public screening!
     
  11. Diwi9

    Diwi9 Senior Member

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    It's bad over there, my family doesn't understand ME at all...they think it's just stress-based, not a disease. I will not be joining the family for a big reunion because it would be too difficult...but I'm arming my parents and siblings with as much info as possible to help educate the rest of the family that there is biomedical research and that this is not a psychological disease. I can remove all the stress I want for me life...and I'm still sick.

    @Joh has been talking about more MillionsMissing demonstrations in Germany...it's a positive start to get people's attention.
     
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  12. Joh

    Joh Inactivist

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    Hi @Diwi9, is part of your family German? Do you need links to German information or videos with German subtitles?

    Yes, but it's sadly just talk so far. I'm home/bedbound so I can just cheer other people on and help with planning. :) But there are no people yet. We only had one physical Millions Missing event in Germany so far.

    Thanks for your interest!
     
  13. Diwi9

    Diwi9 Senior Member

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    Yes, most of my family is German. One or two great links in German would be awesome...I have a very big family and would like them to be better informed.

    I hope some action takes place for MillionsMissing...in Berlin would be AMAZING if it works out!
     
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  14. MartinDH

    MartinDH Senior Member

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    Unfortunately I am too ill to assist physically. But I can offer my skills in German Law... and I'm good at writing - at least in German. I will become a member! Thanks for your input.

    But I think there is much more help needed. Campaigns need personalities, just like Jennifer... hard to find, but necessary, especially now in Germany!
     
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