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  1. Inara

    PIP claimants - email your experiences of the process to Laura Pidcock MP before Westminster debate next Wednesday

    What does that mean? Edit: Physiotherapists are allowed as assessors and to end sick leave?!
  2. Inara

    New German guideline for ME published today

    Even that seems to be too difficult for DEGAM - writing a proper report. Degam should correct that. Do you know if "Lost Voices Stiftung" will contact Degam?
  3. Inara

    New German guideline for ME published today

    Ah, I didn't know. Do you have more information about that?
  4. Inara

    New German guideline for ME published today

    @Valentijn, do you mean a campaign against psycho stuff, or an awareness campaign about ME and its biomedical background. Sometimes I think people with ME in Germany really believe they have a psychosomatic ("functional") disorder, and that they like the psychological treatments. Some simply...
  5. Inara

    Guideline "Tiredness" by DEGAM

    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?
  6. Inara

    New German guideline for ME published today

    Yes, there is no resistance. You can call yourself happy to be in a position to hide from the Inquisition. The best you can do! (And actually, that's what they count on: to construct social aid so painful that people choose living on the street over it, but at the same time to boast of the...
  7. Inara

    New German guideline for ME published today

    Thanks, @Sly Saint, for your suggestions. I don't want to be pessimistic, but writing to politicians haven't helped in the past. Many people did that. There's no interest at all.
  8. Inara

    New German guideline for ME published today

    Yes! So, let's take what we have and try to make the best of it. You won't get the majority of the Germans - even not with BIG topics - it's not their mentality. It seems we will need help from the outside.
  9. Inara

    New German guideline for ME published today

    Oh, I so feel like you, @Joh. One reason why I don't do any upvotes or comments is I don't want to register. I like as much data privacy as possible. Second, it seems I don't have too much to say. I watched the Unrest trailer, and I still wait for the DVD. But to be honest I don't know whether...
  10. Inara

    New German guideline for ME published today

    I'm not on Facebook, still thanks!
  11. Inara

    Trial By Error: A Letter to Archives of Disease in Childhood

    I so much wish such things would happen in Germany. For me, it was moving to see all that signatures. Thanks to all who contributed!
  12. Inara

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    Oh, seems so. 16% and 19%, yes? Are there reasons given? What is "protocol-driven" and "on demand"? Does protocol-driven mean: Click according to a plan; and on-demand: whenever you feel like it? - Ah, yes.
  13. Inara

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    It's important to filter out people who think and fight for themselves - which is one mission of psychiatry. Furthermore, people who are involved in legal disability cases probably know they have a physical illness, and that CBT is useless. It's harder to convince them of the efficacy of CBT...
  14. Inara

    New German guideline for ME published today

    At the Charité I was also told that the situation was even better in Estonia and Latvia (I have not checked that statement). :arghh:
  15. Inara

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    It shows that a shorter speaking time is as uneffective as a longer speaking time, but much cheaper. So you need less money to bring people to say "Everything's fine" and stop "complaining" although they feel shitty and cannot earn money.
  16. Inara

    (Scotland) North-east family speak of ME ordeal

    There is still a law (in theory I confess). The authorities have very much power, something I experience, too, but they can't allow to act too obviously against it. Companies and governments can do that. In law, again theoretically, each party has the right to speak and to be heard. If that was...
  17. Inara

    New German guideline for ME published today

    Very interesting post, @Nina, and welcome to the forum! Yes. Unfortunately, my only idea is the legal stuff, which is only an idea. That is what I was told. Maybe from a medical law point of view nothing can be done. I don't know. Still, I feel something should be possible. Your right of free...
  18. Inara

    New German guideline for ME published today

    Yes. For this a lawyer's advice would be practical. I am not an expert. I have two options. Is there an interest? Afterwards we could have concrete projects. I think about that, and think, and think...I don't know. I have no connections.
  19. Inara

    New German guideline for ME published today

    Yes, that was my decision, too.
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