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  1. Ravn

    'Lab' testing - could dogs smell ME/CFS?

    Nice idea. What with all our metabolic changes it might very well work, too, eventually, just as soon as we have figured out a way to diagnose ME with much more certainty than the current diagnostic criteria can provide. Thing is you have to train the dogs - or rats* for that matter: imagine...
  2. Ravn

    Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol, 2019, Pellegrini. Student thesis.

    You appear to have ME on top of... ME. https://www.aapmr.org/about-physiatry/conditions-treatments/rehabilitation-of-central-nervous-system-disorders/metabolic-encephalopathies
  3. Ravn

    POLL: physical vs cognitive PEM - same or different?

    Just checking I'm understanding you correctly @Creekside. Are you saying that: a) an IFN-g rise about 24 hrs after physical exertion is normal and occurs in all people including in in healthy people, and b) in ME that normal IFN-g rise then causes something abnormal, like excessive activation...
  4. Ravn

    Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol, 2019, Pellegrini. Student thesis.

    No idea. Google just turned it up as is. Going by the address it was posted by Solve ME/CFS in 2019 - so not that long ago - but searching their current website I can't find it. There are a few links in the handout to www.meadvocacy.org (the ones pushing ICC) but I can't find it on their site...
  5. Ravn

    Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol, 2019, Pellegrini. Student thesis.

    Has anybody been able to ignore the rather irritating certainty about what ME is according to Hyde and looked at the actual qEEG study? The way it's written it sounds a little like fitting the evidence to prior expectation but I don't understand the technical details so could easily be missing...
  6. Ravn

    POLL: physical vs cognitive PEM - same or different?

    Clarification: Just realised that the term "cognitive PEM" is ambiguous. It could be interpreted as cognitive symptoms of PEM after either physical or cognitive exertion. That's not the way I meant it. I think it's beyond doubt by now that cognitive symptoms can be part of PEM. I use...
  7. Ravn

    POLL: physical vs cognitive PEM - same or different?

    Haha. No, it was more a case of great minds think alike. ;):) I'd drafted my 'provocative' questions but was hesitating to post them because I was a little worried about being misunderstood. I mean, first I create a poll to encourage people to share about their cognitive PEM - and then I go and...
  8. Ravn

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    I think you are a little too hard on the authors of this particular study when you look at what they had to work with (the fact that after all these decades there still is so little to work with is an indictment on the field in general, not on this particular team, and a different story for...
  9. Ravn

    POLL: physical vs cognitive PEM - same or different?

    Guilty admission: I haven't voted either. In my own poll! :bag: I've started to doubt whether what I thought I knew about my own experience is really correct. :confused: Until recently I would have said my cognitive and physical PEM are much the same with a similar mix of cognitive and physical...
  10. Ravn

    Sore throats swollen glands

    Good question. I've always assumed - based on no evidence whatsoever - that the sore throat is part of the general sickness response symptom cluster. Like when you're coming down with a cold or flu. Confused immune system attacking ghosts or something. But really I've no idea. A quick google...
  11. Ravn

    POLL: physical vs cognitive PEM - same or different?

    I think that must be the case. The physiological changes underlying PEM must surely start during exertion, there can't a be a switch that suddenly flips all by itself 24 hours later or whatever your personal delay is for PEM symptoms to appear. So in that inbetween period we technically have a...
  12. Ravn

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Could be the law of unintended consequences at play. Consider how so many patients, advocacy groups and biomedically orientated researchers and clinicians talk about ME. Our intention is to move the discourse to a point where ME is naturally discussed in much the same way as MS or Parkinson's...
  13. Ravn

    POLL: physical vs cognitive PEM - same or different?

    Full poll question: Please compare your typical PEM from physical overexertion with your typical PEM from cognitive overexertion. Consider the typical range of symptoms you get in each case, plus their timing and severity. Do you feel both types of PEM are fundamentally the same process or do...
  14. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Yes, it was pretty good. The reporter committed a couple of 'chronic fatigue's - somehow that seems to be unavoidable - but apart from that it was good. Even made a reasonable fist of explaining PEM which isn't easy in a brief TV piece.
  15. Ravn

    Medical Express: Researchers identify key role of immune cells in brain infection (2020)

    In mice. https://medicalxpress.com/news/2020-09-key-role-immune-cells-brain.html An interesting bit from the very technical and way above my head paper the above is based on: immune cells get through the BBB into the brain even as the virus is being cleared by antiviral treatment, and the...
  16. Ravn

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    The study makes the important observation that some pwME already have PEM from travelling when they turn up for their day 1 CPET. This raises the question how that influences study outcomes. Do participants with PEM on day 1 experience the same loss of performance on day 2 as participants who...
  17. Ravn

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    This may be a language thing? Both in this study and in others before I've been surprised at how few participants endorse flu-like symptoms given the almost ubiqitous use of phrases like 'the flu that never went away' and 'I don't feel tired, I feel ill' to describe ME. It's hardly likely pwME...
  18. Ravn

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    Yes. This should have been done decades ago. But better late than never. Hopefully this will help dispel the myth that PEM is the same as post-exertional fatigue, and it may help improve future questionnaires assessing PEM. Yes. I, too, had hoped that they might have looked more deeply into PEM...
  19. Ravn

    Enhancing the communication of functional neurological disorder diagnosis: A multi‐disciplinary education session, 2020, Edwards et al

    Have only read the abstract - and that's all the energy I'm prepared to give this - but to me it sounds like they only tested the how well the participants understood the presenter's views before and after an education session? And just assumed that if only participants understood the...
  20. Ravn

    UK writer with ME Susanna Clarke - press articles

    A feature of brain fog I think. Sometimes I need to use so much mental energy to simply remember what options 1 and 2 are I don't have any energy left to also remember the implications of both options, let alone assess their respective importance. If I'm lucky I have just enough mental energy...
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