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  1. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    I’d say these are subtyping factors rather than confounding factors and may contain the most important information. Eg what would this look like split pre and post 3 year duration? It would be great if researchers consistently subgrouped by these factors, instead of just listing the limitation...
  2. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    But We don’t think HIV is caused by microbiome issues, so this seems more indication that this is something that can happen as a consequence of altered immune function not suggesting it’s key to CFS pathogenesis?
  3. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    So are they saying controls who had similar microbiome also had similar metabolomics? That might indicate certain bacteria are causing problems. But then the controls presumably don’t have symptoms so does it indicate that?! Perhaps the microbiome and KEGG pathway results are both red herrings...
  4. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    Would it be relatively easy to process oral microbiome samples compared to [poop emoticon]?
  5. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    Apart from anything re oral microbiome this seems interesting re metabolomics too @JaimeS do you have any thoughts? What else has this research group done?
  6. Jenny TipsforME

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function, 2018, Wang et al

    Do they know it leads to shifts in functional metabolic pathways? This is different from saying it’s associated. Could altered metabolic pathways lead to altered microbiome? Eg mitochondrial dysfunction leading to impaired immunity leading to altered microbiome, or altered response to glucose...
  7. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    @Marco I can’t read it all today but it looks really interesting and more developed than my random thoughts on this topic
  8. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    @Forbin @Andy yes this is the type of thing I mean, the same category of cognitive psychology (I’m rusty but I learnt about this stuff at uni). With the Cocktail Party Phenomenon it reveals that we actually do hear more than we think we do because we do hear whenever someone uses our name in...
  9. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    Yes that study was the epitome of why we need subgrouping. IIRC if you lump everyone together there was no significant difference from controls, hiding that under 3 years the direction of difference was *opposite* from over 3 years. And yet I can’t remember any subsequent studies from other...
  10. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    It seems like there are different causes of POTS, but yes I think it could be described as a selective defect. Eg the baroreceptors don’t accurately signal body position , so leg blood vessels don’t constrict (or EDS impairs this etc) what does get picked up is hypoperfusion/potential faint...
  11. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    @Graham do you ever get any vertigo type symptoms? There’s something called Supermarket Syndrome which is named because it’s particularly triggered by standing walking, thinking and looking just like you do in a supermarket. http://strangesyndromes.blogspot.com/2014/07/supermarket-syndrome.html
  12. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    @Marco @Invisible Woman re driving question I feel like there’s an issue with what cognitive psychologists would call attenuation. It would make sense that this requires some energy. I can’t remember if this has been studied in ME https://en.m.wikipedia.org/wiki/Attenuation_theory It’s slightly...
  13. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    I feel like I know something about this but I cannot bring it to the front of my mind right now. I think there are both biomedical and BPS theories about this. It would help me personally if we could pin down what types of muscle/walking issues are part of ME and which need further explanation...
  14. Jenny TipsforME

    Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

    My head feels full of cotton wool today so hoping I can add useful thoughts This is my initial reaction too. It seems a bit like ‘sometimes it’s this but it can also be that’ when this and that cover almost all possibilities. We seem to have circular definition problems because there have...
  15. Jenny TipsforME

    Poll and discussion: Ear Problems

    I’ve never done Perrin. I can’t decide with this (similar?) technique whether it makes things better or worse. I can feel and hear movement when I do it (it does something) but it perhaps irritates my lymph nodes.
  16. Jenny TipsforME

    What's going on in Bristol(?)

    I’m really confused by this thread (have posts been deleted or am I really foggy?!). I don’t see an ad I see an article when I click the link - I helped Lorna research that article and give a quote in it, it is legit.
  17. Jenny TipsforME

    Poll and discussion: Ear Problems

    Do you ever try lymphatic massage on yourself? Not sure what I think of this eg
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