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  1. Hoopoe

    Denmark: Interview with Per Fink in Dagens Medicin

    Reading this I get the suspicion that his functional disorder is designed to capture the POTS and small fibre neuropathy phenotype in particular. And of course anything that's unexplained. His functional disorder is presented essentially as the brain perceiving symptoms of illness where there...
  2. Hoopoe

    Scientific Advances in and Clinical Approaches to Small-Fiber Polyneuropathy (2019) Oaklander et al

    A review of small-fiber polyneuropathy. Interestingly, it says that evidence suggests it contributes to PEM. https://jamanetwork.com/journals/jamaneurology/article-abstract/2749401
  3. Hoopoe

    Denmark: Interview with Per Fink in Dagens Medicin

    There is the Danish ME Foreningen. I have no idea if they are competent but they seem at least a little bit organized. https://me-foreningen.dk/
  4. Hoopoe

    Denmark: Interview with Per Fink in Dagens Medicin

    None of this will turn bad science into good one. Also, does this mean we should be expecting a journalist to visit this forum? :D
  5. Hoopoe

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    CBT for psychosis and probably also therapies that attempts to cure unexplained illness by searching and talking about presumed emotional trauma. Lightning process and similar "reprogram your brain" philosophies. My feeling is that none of these would pass a proper test.
  6. Hoopoe

    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    That was already known to be a false positive. Personally I hope they focus 100% on the something in the blood. A cure seems still too far away, but a diagnostic test seems within reach. A diagnostic test will do wonders for accelerating research and convincing the public that this is a real...
  7. Hoopoe

    Google bans advertising for speculative and experimental medical treatments

    LP is not using Google for advertising it seems.
  8. Hoopoe

    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    Hanson seemed unusually confident about ME/CFS being caused by a virus. I wonder if that is related to something they've recently found. PS she also thinks that we're no longer seeing larger epidemics because the virus responsible for ME/CFS has become endemic. And that is has gone unnoticed...
  9. Hoopoe

    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    @Jonathan Edwards if I understood correctly, Dr Moreau is finding that PEM provoked with a stress test he is developing is associated with reduced time in REM sleep (it is a bit hard to understand because he talks quickly and has a French accent).
  10. Hoopoe

    Is the efficacy of repetitive transcranial magnetic stimulation influenced by baseline severity of fatigue symptom in patients with [ME], 2019, Yang

    The authors could join Science For ME to learn how to actually produce reliable evidence. Or maybe read a textbook which they have apparently never done.
  11. Hoopoe

    Deconstructing post-exertional malaise in myalgic encephalomyelitis/ CFS: A patient-centered, cross-sectional survey, Chu et al, 2018

    I was revisiting this today and found this paragraph. This seems to confirm that I'm not the only one who thinks that activity during the previous days matters. This has implications for research, treatment and guidelines: that a patient was able to do something without symptom worsening does...
  12. Hoopoe

    UK - New chief medical officer/government adviser appointed, 2019

    Maybe this will translate into greater sensitivity towards ME/CFS as this is the place of the ME/CFS Biobank. https://www.gov.uk/government/news/new-chief-medical-officer-appointed
  13. Hoopoe

    A study I want someone to do

    I can't think of anything that really stands out, except maybe a overstimulated feeling that prevents relaxation and presumably good sleep and seems to result from overexertion, with an increased chance to transition into a crash. Initially I had severely disrupted sleep for no apaprent reason...
  14. Hoopoe

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

    Maybe we're looking at a series of compensatory mechanism at different levels. Fisher seems to have found one at individual cell level, maybe being activated rapidly, perhaps within minutes. There could be others maybe at brain level that take longer to become active, maybe more at typical PEM...
  15. Hoopoe

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

    The CPET is only showing us a small part of what is occurring. The studies on cells are not showing what happens when a CPET is done. The CPET must have immediate effects (or it could not have any delayed ones), we just have found them yet.
  16. Hoopoe

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

    @wigglethemouse I also find the increase in carnitine pathway interesting. I think carnitine helps me.
  17. Hoopoe

    Exploring the validity of the chalder fatigue scale in chronic fatigue syndrome - 1998 Morriss et al

    I think the Chalder fatigue scale is misleading because in chronic conditions, patients cannot accurately do what the scale asks them to do, which is to compare their current state with their pre-illness state. I don't have a memory of how being healthy felt like. What I think happens is that...
  18. Hoopoe

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

    So according to this, the cells are still able to operate thanks to compensatory changes but they don't handle additional energy demands well. That sounds similar to ME/CFS.
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