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That's not my experience. "They" don't have to prove anything, they just have to say it is so because they are the experts. It is you who have to bring along one proof after the other. So would it probably be a better direction - when it comes to doctors and agencies - to go via the PACE trial...

Thank you, @Jonathan Edwards. Actually, what you write goes a little in the direction of another question that pop up: I often critisize (German) guidelines (about CFS) as one-sided, because they nearly exclusively cite psychological papers and/or mention biomedical papers in a negative light...

Thank you so much @Snowdrop @mango @Alvin! That is so much, it is great. I am certain that will help a lot!

Perfect! :)

Thank you, @Snowdrop. All very helpful! Since I'm German, I might translate some things wrong. In Germany, it's seems to be common practice by authorities (health insurance, Work Agency, Pensions agency, other agencies, probably courts) to view ME as psychological, which regularly leads to...

A summary for friends, family, doctors, stangers...But also for authorities. The IOM report could be better for authorities. No? I would also like to demonstrate to authorities (or even sceptical scientists or friends...) that ME is physical and not psychological.

Thank you, @strategist. I thought about the IOM report but wasn't sure. Would you say it's uncritical? Thank you, too, @Snowdrop. I remembered this summary by @JamieS, but would it be ok for authorities/officials? What about https://www.cdc.gov/me-cfs/index.html and...

"denn wir sehen uns der gesamten Patienten- und Hausärzteschaft gegenüber verpflichtet." If only...

That's it. Claims and no proofs. Viewing disagreement as threat. But what's best: "Wir sind nach einem wissenschaftlich anerkannten Verfahren vorgegangen und haben auch die Betroffenen angehört,..." It cannot be proven they heard. What they did is let patient organizations speak. That doesn't...

I know this must have been rised several times. But I simply can't find or remember. Regularly authorities say ME is psychological. Is there a list of qualitative publications showing ME is physical-biological vs. no publications showing ME is psychological? Or differently: If I wanted to proof...

Wow @Barry, perfect job! Thank you. It's good to see what's going on.

What is also addressed - and what touched me personally because that's how I felt during my bad cognitive times, too - is the topic about identity: It's not only as @andypants expressed - feeling incredibly bored but being unable to do something, or feeling overwhelmed by things that were easy...

Very interesting!

Just looked that up...I have this pain you describe, too. Don't know if it's sciatica or something with the disc or whatever.

@Luther Blissett, I had to think and think about your post. I agree with what you say with all my heart. We should aim at creating humanism, love, empathy. I return to thinking that it's not the time for us to go this way. It's not the time to address empathy in people. It's not the time to...

I found a case report linking ganglionitis with severe gut problems (obstipation; it reminded me a bit about Bob :( ) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166812/

I wonder if there could be any connection to this paper @Andy linked: https://www.s4me.info/threads/intestinal-epithelial-wnt-signaling-mediates-acetylcholine-triggered-host-defense-against-infection-2018-irazoqui-et-al.4189/ It is known that Herpes Variella Zoster can cause ganglionitis (->...

I will try @Trish

Quite interesting!

Thank you @Samuel, I downloaded a reading sample. It's quite affordable, so I shall consider bying it.