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  1. Ravn

    Measuring the severity of ME

    I may be repeating some points already made. Started drafting this answer offline and then the power went off for a loooong 9 hours - and a lot of discussion seems to have happened in that time. I'm pleased you put that. It needs to be spelled out very clearly for those not familiar with PEM...
  2. Ravn

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

    This. Because too few have been interested enough to even try to have a look. Plus different people use the terms differently, to ensure maximum confusion. These are some of the interpretations I've come across and can recall at the top of my head; there are likely to be others. No idea which...
  3. Ravn

    Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine, 2020, Ekholm et al

    This seems to be what they're proposing to develop: https://www.icf-research-branch.org/icf-based-documentation-form Currently there only seem to be ICF core sets for a limited number of conditions. I had a play with the electronic documentation form tool (see link in quote), using MS as an...
  4. Ravn

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Impressive work @Michiel Tack :emoji_thumbsup: Decidedly unimpressive response from Cochrane :emoji_thumbsdown:
  5. Ravn

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

    Lily Chu making sense, as usual.
  6. Ravn

    Editorial: Placebo and Nocebo Effects in Psychiatry and Beyond, 2020, Weimer at al

    A more nuanced review of placebo. Have only skimmed it, so my summary may be a bit off. The gist seems to be that under certain conditions, some placebos do create a physiological response. Mostly this requires pre-conditioning with an active intervention first, so if you've been using oxygen...
  7. Ravn

    Fatigue measurement scales

    I think the key here is that it's not measuring fatigue itself, it's measuring the impact of fatigue. To my mind, what this MS Fatigue Impact scale highlights yet again is how differently we are being treated to people with diseases like MS. There isn't all that much wrong with any of the...
  8. Ravn

    Discriminatory cytokine profiles predict muscle function, fatigue and cognitive function in patients with ME/CFS. McArdle et al. 2020

    Can somebody explain figure 2B and the text relating to it? So the text says no significant difference in muscle fibre generated mitochondrial superoxide, neither with nor without addition of a nitric oxide synthetase inhibitor. Yet the graphs seem to show a difference. Figure 2B shows complete...
  9. Ravn

    USA - Mayo clinic

    To be fair it is vastly better than it was, which was utterly appalling. Still not good, exactly - the exercise bit is way too garbled for that - but apart from that it now roughly aligns with IOM/NAM. Baby steps.
  10. Ravn

    Audio distraction: podcasts, audio books, radio on demand

    Ha ha. I often say that if only I could remember all the things I have 'learnt' listening to podcasts I'd be a very wise person by now. Alas...
  11. Ravn

    A SWATH-MS analysis of ME/CFS peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction: Sweetman,Vallings,Tate et al Aug 2020

    Is there a way of testing metabolic profiles in those different microenvironments?
  12. Ravn

    Audio distraction: podcasts, audio books, radio on demand

    This thread has gone a bit quiet. Let's see if we can revive it. I'm currently binge-listening to the "Subtitle" podcast. Just a few of the topics, the range is wide and the concept of 'language' interpreted loosely: "Subtitle" is part of the Hub & Spoke stable of podcasts...
  13. Ravn

    Coronavirus - worldwide spread and control

    In one of those weird coincidences, while NZ health authorities were circling around that cool store at the centre of our latest outbreak I was listening to an audiobook recounting several people's childhood memories from Greenland. What's the connection you might ask. Well, one of the...
  14. Ravn

    Coronavirus - worldwide spread and control

    Of historical but also current interest. Article based on as yet unpublished research. For context, the population back the was about 1.6 billion (according to worldometers.info), so roughly equivalent to nearly 5 million dying today...
  15. Ravn

    BMJ Management of post-acute Covid-19 in primary care, 2020, Greenhalgh et al

    Patients were involved in reviewing this prior to publication. One of them was Paul Garner - I don't recognise any of the other names - he may well be reponsible for the bolding of "if tolerated".
  16. Ravn

    Fatigue measurement scales

    More discussion on the same topic and links to some other scales (both PEM and more general ones): https://www.s4me.info/threads/defining-and-measuring-post-exertional-malaise-a-discussion.15783/
  17. Ravn

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

    There was an interview on NZ radio today. No mention of ME. Part of it about the long hauler phenomenon that hasn't had much media attention in NZ to date, the other part about the Survivor Corps in the US which is primarily a vehicle to encourage recovered patients to donate plasma and partly a...
  18. Ravn

    Coronavirus - worldwide spread and control

    Genomic epidemiology reveals transmission patterns and dynamics of SARS-CoV-2 in Aotearoa New Zealand Jemma L Geoghegan et al Preprint Aug 2020 https://www.medrxiv.org/content/10.1101/2020.08.05.20168930v2 And to mark 100 days without community transmission - how long can this lucky streak...
  19. Ravn

    Autonomic Phenotypes in Chronic Fatigue Syndrome (CFS) are Associated with Illness Severity: A Cluster Analysis, 2020, Zalewski, Morten, Newton et al

    This may account for the fact that nearly 20% did not report PEM. At least this was recorded and it turns out that the non-PEM cases cluster in some of the subgroups. Which could possibly tell us something but what that might be isn't further analysed. Seems like a missed opportunity. I'd like...
  20. Ravn

    Accurate and Objective Determination of ME/CFS Disease Severity with a Wearable Sensor. Palombo et al. 2020

    Weird phrasing all right. Based on the article it looks like something got lost in translation between mental concept and the written expression of it. This is a Preprint. Can they still fix it? That's good to hear. This could be a useful addition to the toolkit. Of course no single device is...
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