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  1. Inara

    Guideline "Tiredness" by DEGAM

    Hi @Philipp, again, very good points! According the PET scan: The same question was raised, how to know if the findings show a pathology. His answer was it also depends on the radiologist's experience. Since he was doing scans of any kind (including SPECT and PET) for decades I'd say he has the...
  2. Inara

    News Article: Court orders Atos to pay disabled woman £5,000 over dishonest PIP assessment

    In Germany, a judge's verdict is published, most often online, too. I don't know how it is in the UK. I would be interested in the specifics and on what grounds the court decided in your favor. Maybe I can learn something from that. Sorry if I should have found this information by myself - help? :)
  3. Inara

    News Article: Court orders Atos to pay disabled woman £5,000 over dishonest PIP assessment

    Dear @Cemoi, would you be willing to link to the verdict? By the way, really great what you did!!
  4. Inara

    Guideline "Tiredness" by DEGAM

    You raise good points, @Philipp. Some we cannot tackle - studies would be needed. It would be a good start to collect high-quality papers that show a biological genesis in ME. I don't know this. Do you have a link? Why is SPECT not looked upon as unreliable? I had made a PET scan. There it...
  5. Inara

    Guideline "Tiredness" by DEGAM

    I have just checked §278 StGB. Very interesting! Maybe I will ask my lawyer about that. But a feeling tells me it is very hard to prove. It's always hard to prove something was done on purpose. One thought was we might achieve something if doctors were sued. This could increase frustration on...
  6. Inara

    Guideline "Tiredness" by DEGAM

    That's what my GP said, too. Still, he knew all the guidelines I talked about. Even if some German researchers and people think, German stuff is the best, they are still embedded in the international scientific system. They cite international papers. If an institution cites questionable work...
  7. Inara

    Guideline "Tiredness" by DEGAM

    I see. Actually, I don't know. I wondered myself. I guess they might have thought that it's easier to publish "informative leaflets" instead of "mandatory guidelines" which can be attacked legally. And maybe following the motto "Out of sight, out of mind".
  8. Inara

    The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it

    @Joel, I understand what you mean. Thanks for clarifying.
  9. Inara

    Guideline "Tiredness" by DEGAM

    I don't understand what you mean, sorry :( Would you explain again? Hm...Not so wrong....But something must have changed the doctors' views. 20 years ago doctors would laugh at you if you came with psycho stuff. If they couldn't find something they said they can't find the reason and that was...
  10. Inara

    The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it

    @Joel, you can critisize in a respectful and constructive way, and you can critisize disrespectfully. Why choose the nasty way? As researcher you must address the reviewer's points nonetheless if you want your results published, so there is no need for disrespect. Anonymity (e.g. in the...
  11. Inara

    Neuron-specific enolase

    Does anybody know the role of neuron-specific enolase (NSE), apart from tumors? Does elevated NSE play a role in ME? Does anybody here have elevated NSE?
  12. Inara

    Book due out: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery"

    I am not surprised in times of 'Lightning Process', positive thinking and guidelines that emphasize psychosocial viewpoints.
  13. Inara

    Trial By Error: Bristol’s Complaint to Berkeley [Short Tuller blog 23rd December 2017]

    Is anonymity more important than safety? Isn't an ethics commitee's job to oversee if a trial is safe, doesn't contain criminal acts and so forth? So, could a researcher torture trial participants if it's anonymous? Sounds absurd.
  14. Inara

    Book due out: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery"

    I did make the experience that I was treated more respectfully and taken more seriously if my husband or even my father were present during an appointment with a doctor. My feeling is there is a certain amount of prejudice against women in some or many doctors. It's subtle. I also made the...
  15. Inara

    Which autoantibodies would you test for?

    In fact, that's what she meant: Instead of trying to find which illness and symptom go together, she will take "the entire picture" (of course, exome is not everything, but very much). She had made the experience that with their "picking" they missed illnesses. And after that she might be able...
  16. Inara

    Which autoantibodies would you test for?

    I imagine if I were presented with the long list of symptoms I have I would feel overstrained. Additionally, if I had no experience with multi-systems and how they interact - if I would expect only ONE underlying cause - I couldn't solve the problem. There is a high probability that if one...
  17. Inara

    Hospitalized Patient w/ Severe ME Looking For Treatment Guidelines

    @TiredSam In German it's called "Patientenverfügung", and theoretically, acc. to BGB, the hospital and staff has to comply. (But you know how it is with the law... :) ) I wrote that psychological diagnosis and treatment are felt to violate my basic human rights and that I don't believe in the...
  18. Inara

    Does anyone else get IBS as part of a crash?

    @ladycatlover, I hope that everybody who had gut symptoms for the first time had them properly checked. Although it doesn't mean there is nothing if a doctor says there is nothing, it means there is nothing life threatening. That's important.
  19. Inara

    Does anybody know this?

    @Subtropical Island I will. Thank you, @Wonko, for describing your experience. It is pretty similar to mine, only the time differs. So it might be exhaustion in the end. Still I think I will have it checked. You are right - one can get used to anything (as we all know, I guess). Still, at...
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