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  1. Inara

    Empty Sella Syndrome

    I don't know so much about this. Do you have any information about how I can check on my MRI scan about this for myself? I will never find someone to do that for me.
  2. Inara

    EDS and ME - is there a connection? hEDS

    @MsUnderstood, that sounds very interesting and informative, thank you!
  3. Inara

    Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia, 2017, Natelson et al

    But in this case, there were no major differences between CFS, FM and CFS+FM (which reproduces the previous finding), and the differences between CFS/FM and the healthy controls seem to be comparable (i.e. coharent with the previous study). Right? Would this be an indicator that the different...
  4. Inara

    Researcher Interactions Video: Science for ME Q&A with Dr José G. Montoya, 16th January 2018

    This is just awesome! I feel privileged to make this experience, to listen to Mr Montoya. Thank you, @Andy and @Ron, and many thanks to Mr. Montoya for answering our questions and for giving hope. I so much wish I could somehow get 25Mio. dollars :)
  5. Inara

    Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia, 2017, Natelson et al

    Thank you, @Jonathan Edwards! Why is it a problem to use data at different points of time (they used data from a previous study and added new data and compared that again) if they are normalized/standardized? That was my impression, too. Good to have that confirmed.
  6. Inara

    Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia, 2017, Natelson et al

    What does that mean, elevated lactate levels in the brain (e.g. consequences, causes...)? How does that show on brain scans? Why is MRI spectroscopy such a good method? And how does this fit into other findings, like that by Fluge and Mella (-> pyruvate dehydrogenase)? How should it be used as a...
  7. Inara

    The Scientism of Psychiatry

    I, too, have the impression the anti-psychiatry movement had its peak in the 70s and 80s. Although there still are organisations who are involved. But it's not easy for them, I'd say, because most people don't understand what psychiatry is. And they don't care. Most people think only those who...
  8. Inara

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    I found this questionnaire weird when I saw it the first time. (It is used in Berlin amongst others.) And this question, if you have problems with starting things, puzzled me exceedingly. I left it open. I discussed it with the doctor, and she explained it is not meant as lack of motivation...
  9. Inara

    Biopsychosocial seminar in Norway (June 2018)

    Welcome to the dungeon. What a horror show
  10. Inara

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

    There's no problem for NICE to use Oxford criteria instead and keep CBT/GET.
  11. Inara

    Free nasal microbiome test/study at uBiome

    That's a good point, @TigerLilea. But shipment tracking says it's stuck. So it seems the kit hasn't arrived at uBiome.
  12. Inara

    Guidance for commissioners of services for people with medically unexplained symptoms - 2017

    Stories like you posted, @Arnie Pye, make me very angry. I wouldn't go on speaking with such doctors. It's unbelievable what happens out there. I get the feeling this BPS/MUS problem won't be overcome by being nice and sensible. I made the same observations as @unicorn7. Two major problems...
  13. Inara

    Referral to Inherited Metabolic Disorders Clinic

    I would be very interested in how it went.
  14. Inara

    EDS and ME - is there a connection? hEDS

    Just my experience in my family: First ME, and then one issue after the other appeared.
  15. Inara

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

    Yes. Why do NICE cling to it? It can't be the doctors who feel awkward if they have nothing to offer. It weren't the doctors in the first place. It isn't for the patients. It were DWP issues and goals, and still are. Maybe this should be considered. It's politics. Hopefully it will become too...
  16. Inara

    Guidance for commissioners of services for people with medically unexplained symptoms - 2017

    I saw one of those online. :sick: I think it was linked to Per Fink...
  17. Inara

    Stanford ME/CFS Initiative: PEM Avoidance Toolkit

    I can drive short distances, and I made it a habit to look decent when leaving the house (it's something I also do when I have an infection - plus, I nearly always have a color in the face, can't change that). It's maybe not smart not to look sick when sick. But I don't like looking sick...
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