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You don't need your GP for that. I don't want to justify my advance directive. It's thought through, that will suffice. I have three doctors' certificates that validate my legal competence at the time of writing the advance directive.

Thank you, @alicec. I think I understand. I reminded myself of alkaline phosphatase which rises, too, if certain tissues are damaged. So I guess that there's also the possibility of low NSE. What would that mean? If no rapid neuronal destruction can be observed, would that mean that elevated...

Thank you @Rosie. I wonder if this long shipping time will influence the test.

I didn't receive it yet. Well.

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...

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? :)

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

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...

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...

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...

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".

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

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...

@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...

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?

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

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.

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...

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...

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...