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  1. Inara

    New German guideline for ME published today

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

    New German guideline for ME published today

    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...
  3. Inara

    Publications that show ME is biological

    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...
  4. Inara

    United Kingdom service: Royal Liverpool and Broadgreen University Hospitals NHS Trust

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

    Book for smart people who have neuroimmune diseases

    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...
  6. Inara

    Merryn Crofts - media and inquest

    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.
  7. Inara

    Ideas For Marketing ME More Effectively...

    @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...
  8. Inara

    Intestinal Epithelial Wnt Signaling Mediates Acetylcholine-Triggered Host Defense against Infection, 2018, Irazoqui et al

    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/
  9. Inara

    Merryn Crofts - media and inquest

    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 (->...
  10. Inara

    Book for smart people who have neuroimmune diseases

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

    Merryn Crofts - media and inquest

    This is so important. Happy and sad. (Thank you @Lisa108 for the link - I wanted to save it, and I couldn't on Facebook.)
  12. Inara

    Chronic pain often has no physical cause. Psychotherapy can reduce the suffering.

    Thank you, and @Alvin. This feels so very good right now, you don't know how good and important that was for me right now. It is so cruel that pain is often so easily dismissed.
  13. Inara

    Anti-convulsants - Pregabalin and Gabapentin

    I think something is the matter with the nerves (well, surprise surprise with ME), at least in this leg. And the ENG was this "last drop". I also believe that this neuropathic pain would have come some day, but maybe not before 5 or 10 years. My cool GP isn't. His opinion was, "psychosomatic"...
  14. Inara

    Anti-convulsants - Pregabalin and Gabapentin

    Thank you, @Anna! :angel: I have tried CBD oil. What dose do you take? I will try again and "play" with the amount. I didn't take Pregabalin yesterday (again, experimenting), and it seems the pain is returning, but today very low. Today I feel wired, although I didn't sleep well. It's not a...
  15. Inara

    Mental health awareness week includes neurological conditions?

    I agree with you. But I also think that a friendlier work climate and less harmful stress would be positive for everyone.
  16. Inara

    Michael Sharpe skewered by @JohntheJack on Twitter

    Nooooo! Those people musn't misuse Feynman! I can imagine all my former physics and maths colleagues making....Woahhhh! :arghh: (Well, we would also make nasty remarks and would have a good laugh... :D)
  17. Inara

    Ideas For Marketing ME More Effectively...

    This is what I found on p. 154: Is it what you meant?
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