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  1. Simon M

    Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning, 2018, Valdez, Proskauer et al

    I read this for another purpose and thought I'd post my comments here. It makes sense to explore the value of the huge insurance claims database, with thousands of cases of "CFS" and "ME", But both the symptoms/factors selected by machine learning and the demographics look implausible for...
  2. Simon M

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Here is the key quote from Michael Sharpe, and he has it wrong: The good thing about a prospective study, the design here, is that you look what happens first and then what happens afterwards. Since the immune activation happens first and the fatigue a long time later that’s good evidence that...
  3. Simon M

    Increased risk of chronic fatigue syndrome following burn injuries, 2018, Tsai et al

    The instants rate of 1.6 cases per thousand = 0 .16% new cases per year. That is implausibly hi given that prevalence (two cases) is around 0.2%. So I would agree that this is not measuring ME/CFS, particularly as they didn’t do a proper diagnosis. There I would be extremely interested to see...
  4. Simon M

    Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)

    Perfectly put. I am concerned about this claim: it would explain how they get such a small P value from the tiny sample, but that P value does not tell you how likely the finding is to hold up in the wider patient population. On the letter is what we need to know. There is another issue. IIRC...
  5. Simon M

    Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)

    This looks very interesting, but I am eager to see the full text. The P values are astonishing low for such a small sample size (n = 9). For example: “ME/CFS patients had higher entry time (~12%, p<0.0001)” Normally, a mere 12% difference would not lead to such an extreme P value. This...
  6. Simon M

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

    @RDP Let me echo @Trish's thanks to you for joining the forum and the discussion (it's great to have researchers here) and add my own thanks for the detailed responses to my many questions. I'd like to respond to a few of your points, grouped below into a few themes: Focusing on individual...
  7. Simon M

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

    Thanks. Perhaps it would help if I summarise my questions here (modified after the helpful feedback, esp from @alex3619 and @Ravn). 1. Biology of causing ME/CFS 1.1 How do kynurenine, serotonin (and NAD?) leads to ME/CFS, particularly given the limited gene expression of IDO 2 (see below)...
  8. Simon M

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

    Questions about the metabolic trap, and some concerns Thanks for the feedback. Is the genetic evidence robust? I'll start with my main concern about the trap, the strength of evidence for a genetic problem. Phair started this work with an intriguing approach of looking for genes where every...
  9. Simon M

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

    I've come very late to the Metabolic Trap and have some questions about it, as well as one particular concern. But just to make sure I have got this right, could old hands at this game let me know if my summary, below is accurate? Thanks Summary: Robert Phair’s metabolic Trap idea aims to...
  10. Simon M

    Dr Alan Moreau's new, low-stress protocol for provoking PEM.[Thoughts?]

    Thanks for all the replies. The main comment seems to me that, while the protocol clearly has an effect on (most0 patients, as well as biological effects, there are doubts as to whether this amounts to full post-exertions malaise. That view is reinforced by the two people to have undergone the...
  11. Simon M

    Dr Alan Moreau's new, low-stress protocol for provoking PEM.[Thoughts?]

    Sorry. The Stanford video is best https://www.s4me.info/threads/cfs-research-center-at-stanford-second-annual-community-symposium-sept-29-2018.3255/page-5#post-109963 @ 2:26 He did, and he made a case for several: for example, mental fatigue could be explained by one of the micro RNA...
  12. Simon M

    Dr Alan Moreau's new, low-stress protocol for provoking PEM.[Thoughts?]

    Dr Alan Moreau presented preliminary results of his work on micro-RNAs (miRNA) at the recent Stanford (2:26) and CMRC conferences. Micro-RNAs are small molecules that regulate gene expression by binding to messenger RNA and blocking their translation into proteins. miRNAs might be new to you and...
  13. Simon M

    Stanford Community Symposium 2018: Sikora - T cells

    Mostly, Michael Sikora recapped last year's finding of T cell clonal expansion in ME/CFS patients. But I liked that he made a real effort to make his talk accessible to a wider audience, and maybe it will be useful to those who want to know more about the role of T cells in the immune system...
  14. Simon M

    UK CMRC Conference 2018 - Prof Carmine Pariante

    Persistent fatigue as a model for CFS Sorry about the length of this: would have been shorter if I'd had more energy Concerns about this research have already been covered well: Pariente's strong belief that ME/CFS is a psychosocial illness; that this isn't a study of ME/CFS itself, but a...
  15. Simon M

    Stanford Community Symposium 2018: Jarred Younger

    My notes on the presentation from Dr Jarred Younger (@5h 27’): A new, simpler way to measure neuroinflammation Younger presented findings from his study in which he used brain scans to reveal levels of metabolites and changes in temperature across the brain. He proposed that these measures are...
  16. Simon M

    Suggesting an additional advocacy direction

    In principle, this strikes me as a very good idea. thank you, Graham and @Barry . The current problem is that, while there are exciting findings, they haven’t been Published and/or replicated and/or are in small studies. I suspect that this rules out and Horizon-style program. I would feel...
  17. Simon M

    Ithaca College: Tireless Work on Chronic Fatigue Syndrome (interview with prof. Betsy Keller)

    By my calculation it’s 10 patients x three centres x 2 years equals = 60 patients, plus the same number of controls. That is a very small sample, but remember they are using a before/after exercise approach and that gives much “cleaner“ results, as explained here: ( from a statistical...
  18. Simon M

    A brightening future: the state of ME/CFS research (Discuss! Simon M blog)

    I know that quite a lot of people are desperate for progress and while there are no clear candidates right now, things really are visibly moving on. The field is much stronger than even five years ago. This is all the more remarkable given that this has been done on a shoestring - relative to...
  19. Simon M

    A brightening future: the state of ME/CFS research (Discuss! Simon M blog)

    A brightening future: the state of ME/CFS research - ME/CFS Research Review Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more...
  20. Simon M

    Jarred Younger confirms neuroinflammation in brains of ME patients

    if I have the energy, I would. I don’t :(. My probably-final blog has been stuck in the pipeline for a month as I dxon’t have the energy to produce even a fairly short one. It’s worth noting that Maureen Hanson’s collaborative is going to do a fairly large replication (50 cases/50 controls, I...
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