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  1. Hoopoe

    US NIH: Responses to NANDS Request for Information: How to advance ME/CFS Research

    Wow that's a lot of responses. I counted 328 pages of responses in total. Some are thoughtful, some are weird. Either way it shows a great public interest. PS: a very rough estimate is 8 responses per page, or 2624 responses in total.
  2. Hoopoe

    ME Association magazine summer 2019

    I agree that we need the narratives about ME to accurately reflect the science. If we actually do this then almost all the narratives that circulate fall apart. The narratives that purport to explain what ME or CFS really are, what they are caused by, and how they can treated.
  3. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    It's a bit like the PACE authors who justified outcome switching by saying it made the results align with previous studies and their clinical experience (or something along those lines). It would make a lot of sense to me if there was some energy generation problem in ME/CFS but accepting false...
  4. Hoopoe

    Mini-review: Limitations and Off-Target Effects of Tryptophan-Related IDO Inhibitors in Cancer Treatment, 2019, Gunther et al

    As far as I understand: What is happening with kynurenine and cancer cells with mutations that lead to a highly active kynurenine pathway can escape destruction by the immune system because activation of the kynurenine pathway has a local immunusuppressive effect. There are attempts to develop...
  5. Hoopoe

    The People’s Trial: your chance to be a scientist in a fun online trial - 6 Aug 2019

    They are curating their image of being the authority on interpretation of clinical trials. Everyone should know Cochrane stands for expertise and quality :D:rofl:.
  6. Hoopoe

    Researcher Interactions Question collection thread for S4ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019

    How far away is a diagnostic test? Even one that merely shows something is wrong and is usable in practice by physicians would be a nice step forward.
  7. Hoopoe

    Researcher Interactions Question collection thread for S4ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019

    I would like to know what other illnesses have similar metabolite profiles, and whether he feels confident to say anything about metabolism in ME/CFS yet.
  8. Hoopoe

    Researcher Interactions Question collection thread for S4ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019

    I am very interested to hear what he thinks about Fisher's findings.
  9. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    These are the five factors which as I understand are multiplied and then divided by 0.182 to obtain the mitochondrial energy score (so your calculations would be incorrect). Here are these five factors, together with the CFS ability Scale scores.
  10. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    The mitochondrial energy score is constructed from several different measured parameters. Maybe that's why it doesn't look like a natural thing, because it's a human construct. Edit: I'm inclined to agree that very low mitochondrial energy scores are suspicious because it implies that in the...
  11. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I'm reading one of the papers on the test now https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ They write It doesn't specifically say that the delay between blood draw and testing was the same for both groups. If the authors believed that it wasn't relevant, they wouldn't consider there...
  12. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    The authors of the present paper have some data that suggests cells change over time. It's hard to understand the technical details but the meaning is clear. If the Myhill group used as controls samples that were fresh, while patient samples were shipped by mail and at least 24 hours old, that...
  13. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    One way to look at the situation is that patients were being sold an expensive test that isn't fit for purpose. Maybe the replication attempt is flawed and the test works but it's not a good sign that there is disagreement. The possibility that the test isn't fit for purpose must be seriously...
  14. Hoopoe

    Prevalence of functional somatic syndromes and bodily distress syndrome in the Danish population: the DanFunD study, 2019, Petersen et al

    I think that's the highest prevalence estimate I've ever seen. Therapists will be pleased they can now potentially give CBT/GET to many more people, or at least that seems to be the goal here.
  15. Hoopoe

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    Yes, mass hysteria is not just panic spreading through a group. It claims to explain all sorts of symptoms that are difficult to explain with panic or exaggeration. To me a more plausible explanation is a combination of panic spreading in the presence of some physical cause of symptoms. If for...
  16. Hoopoe

    BBC Article - Re 'Mass hysteria in Malaysia' - SW comments

    In an alternate universe (maybe this one too), in Malaysia a group of wise men are explaining in the press how demonic possession produces real symptoms that are often mistaken for mass hysteria. They also talk about the stigma of demonic possession and how this leads to people being overly...
  17. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    A not entirely authentic outward optimism with doubts that are never expressed? They want to believe, but testing CBT/GET in a properly controlled clinical trial is too scary because they know it might not actually work.
  18. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    Do you think that CBT/GET proponents know this treatment doesn't work but pretend to honestly believe that it's effective?
  19. Hoopoe

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    They're in a loop trying to save their latest dishonest statement with more dishonesty and it gets less believable every year. In their response to Wilshre et al, Sharpe was essentially claiming that they have found a method to eliminate the issue of biased reporting in questionnaire-based...
  20. Hoopoe

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    Thanks. Do you know if Soares-Weiser believes the scare stories about patient activists?
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