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  1. Inara

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    @Alvin, @large donner, just great! :rofl:
  2. Inara

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    I mean, you're ironic. The BPS folk really propagate that crap.
  3. Inara

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    I always wonder: Why is it bad to feel "depressed" (better: sad) with a disabling illness, where everything changes, financial problems might occurr, partners might leave, friends are lost...? I don't like that you always have to smile and think positive anytime, and if you don't, you need a...
  4. Inara

    How do we partner with Pharma?

    I can only speak of the cases I know of, and I never had the impression the company want to bully anyone. And I think no company would spend millions of dollars in bullshit patents and litigation. Again, I can only speak from my experience, but I know my company is a little different than...
  5. Inara

    Are objective outcomes of cognitive function possible?

    Actually, I have bigger short memory problems (and the PET scan showed undersupplied regions in the hippocampus and amygdala). I can forget from one moment to another what I wanted to say, what I wanted to do, what other people said. I forget that I already told a story, I forgot that I met...
  6. Inara

    How do we partner with Pharma?

    That's something I always thought to be true - and honestly, still do, but in my (not so small) company I always heard US courts favor the "small guy"; possibly due to "the American dream"? I never understood though, but that seemed to be the experience of seniors. There were bigger problems...
  7. Inara

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Well, it is highly problematic to raise the topic of eugenics as a psychologist/psychiatrist! History already is forgotten, and I fear it will repeat itself, as always. (If I remember correctly, a bunch of German psychiatrists invented the gas chamber and made first tests in Czech or Poland. And...
  8. Inara

    Free nasal microbiome test/study at uBiome

    Yes, and I'm not very good with patience :D although it got better
  9. Inara

    Free nasal microbiome test/study at uBiome

    Oh, I hope to get a positive message soon, too. Already so impatient :)
  10. Inara

    Format of NICE stakeholder meeting?

    Is it good they are involved with NICE? Can they be trusted? Edit: Ah, I see @Skycloud answered it in part :)
  11. Inara

    Format of NICE stakeholder meeting?

    I always confuse the organizations. Was Action for ME the one who contributed to Crawley and PACE? Or was that Association for ME or...?
  12. Inara

    Are objective outcomes of cognitive function possible?

    I think this is an interesting idea - and could be a topic for a research project. Does increased blood/oxygen supply improve some symptoms, like cognitive function? For instance, what about muscle performance, too? Would they burn later? Could they be used longer? I read that oxygen intake...
  13. Inara

    Are objective outcomes of cognitive function possible?

    That's a very good point. Sleep problems could well contribute to cognitive problems. But I guess there might be more. A PET scan shows undersupplied brain regions in my case, and I made the recent experience of hypoxia symptoms when air quality wasn't optimal (including weakness and partial...
  14. Inara

    David Bell about "slow sepsis" in ME

    It's a word I use to explain what I see in my family. (No doctor would tell me my illness might be degenerative, quite the contrary.) It doesn't have to be correct, particularly in general. But it fits my personal observation. I see structural change and loss of function of organs in my family...
  15. Inara

    David Bell about "slow sepsis" in ME

    Existing symptoms get worse, new symptoms appear, problems with organs arise etc. (in my family's case: the heart, arteriosclerosis, brain strokes...but also rheumatism, cataract, Carpal tunnel syndrome, diabetes, whatever...). I have to say my impression is this is due to overdoing. I am...
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