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  1. Hoopoe

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    A bit later he says that "sequencing is about 1000 dollars per patient so they decided to do it differently [...] so he worked out a way to sequence this gene for 10 dollars." If this new way is flawed then that could explain why they're finding IDO2 mutations in all patients.
  2. Hoopoe

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    Okay. I found what I mentioned previously: Ron Davis, on the IDO2 mutations. "If you do the automated analysis, it doesn't show up. Simply because it's excluded by the software because it can't possibly be important because it has too many mutations". https://youtu.be/CGWcA1xYnyY?t=2057
  3. Hoopoe

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I heard that the software used by Phair to analyse genetic data ignores IDO2 mutations because they are so common. Maybe something like this is happening with the Biobank data and it's only showing what is considered to be potentially important which might only be very rare mutations. Another...
  4. Hoopoe

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    What does "deemed significant" mean? Ron Davis recently said at the Invest in ME conference that 75% of the population have IDO2 mutations, but 20 severe patients and 46 additional patients tested all had IDO2 mutations. This is very unusual. Something is very wrong. Either their method, or...
  5. Hoopoe

    “Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

    What could be done is having patients do a GET program while wearing an accelerometer. As soon as they begin to struggle, have them stop and do in depth testing of metabolism, neurological function, etc. Home visits might be viable to avoid putting further burden on patients. That could finally...
  6. Hoopoe

    “Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

    It has to be possible to figure out where the bottleneck is in the system that prevents sustained activity levels or an increase.
  7. Hoopoe

    “Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

    This made me think of this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/ I think this also implies that accelerometer studies need to be carefully designed or they could only show the initial improvement but not the subsequent struggle.
  8. Hoopoe

    Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing PEM following cardiopulmonary exercise testing, 2019, Chiu et al

    I am revisiting this. It seems notable because the people assessing the 2-day CPET results were blinded. 8 of 14 ME/CFS patients showing reduced oxygen consumption on day 2. My feeling, without checking, is that this seems a little less clear cut than previous (unblinded) studies. Still there...
  9. Hoopoe

    Piezogenic papules in Ehlers-Danlos and ME/CFS?

    Many patients on that twitter thread are saying they have these as well. Do we all have EDS or is that just a nonspecific sign? Edit: Trish was faster.
  10. Hoopoe

    Piezogenic papules in Ehlers-Danlos and ME/CFS?

    I saw this on twitter today. To my surprise I have of few these papules on each side.
  11. Hoopoe

    Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

    I also feel that patients often have what are probably comorbidites like as of yet poorly understood gut issues or strange reactions to food. I need to talk about this more when I have the energy. Or things like constant mild sinus issues. Or weird blood sugar fluctuations. Or this or that...
  12. Hoopoe

    Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

    I'm not quite sure where I stand on this. I think we need to test all at least remotely plausible ideas simply because we haven't made much progress. On the other hand my feeling is that often patients are jumping to conclusions and prematurely forming beliefs on the nature of ME/CFS that...
  13. Hoopoe

    “Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

    I'm sure there is no discussion whatsoever about the problem of bias and subjective outcomes. Can anyone check?
  14. Hoopoe

    Predictors of Response to Cognitive-Behavioral Therapy for Body Dysmorphic Disorder (2019) Greenberg et al

    How would that look like? Are you ready to change? The treatment is fantastically effective. Prepare to live a new life free of illness. All you need is put in good effort and we guarantee it will work. They seem to be in the process of discovering faith healing.
  15. Hoopoe

    Pathological Mechanisms Underlying Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2019, Fisher et al.

    Fisher is that Aussie mitochondria expert, right? He seemed to really know what he was talking about.
  16. Hoopoe

    Chapter 29 - Clinical neurophysiology of postural tachycardia syndrome, 2019, Sandroni et al

    Being aware of the pounding heart is not hypervigilance. It's not a choice. It's no different than being aware of pain. You can't just choose to not notice it. This is not "patients obsessively focusing on their heartbeat and amplifying their perception of benign bodily sensations until they...
  17. Hoopoe

    Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa

    Correct me if I'm wrong. The negative correlations should be expected or are least unsurprising, considering that anorexia nervosa is defined by low body mass. They also found some genes but how do we know that these genes aren't just the same information at the gene level? This doesn't seem...
  18. Hoopoe

    Study finds psychiatric diagnosis to be ‘scientifically meaningless’

    Everything is due to trauma. Isn't this basically Freud again? Maybe with less sex obsession.
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