Search results

  1. Ravn

    Pacing - what do you do/how would you describe it?

    I wonder if that's the result of ME being uncomfortably caught between acute and chronic illness? With acute illness we generally expect that we have treatment of some sort and get well again. With chronic illness expectations from treatment are typically different. In some cases there may be...
  2. Ravn

    Pressure Point Threshold and ME/CFS comorbidity as Indicators of Physiotherapy Response in Fibromyalgia. Falaguera-Vera et al. 2020

    A mixed bag, also apart from the uninformative abstract. The idea behind the study seems reasonable: people with FM and pwME struggle to exercise and suffer from pain. Based on studies on massage therapy in general MT may provide some of the benefits of exercise without actually exercising and...
  3. Ravn

    Pain in adolescent chronic fatigue following Epstein-Barr virus infection, 2020, Wyller et al

    That was my first thought, too. But I expect that somehow they'll manage to twist their findings into a version of there's nothing wrong with the peripheral nerves (normal pressure pain thresholds) therefore the high pain symptom load must be due to central sensitisation (amplification of normal...
  4. Ravn

    HealthPathways, RACP & NICE guidelines - how do they fit together?

    A clear improvement on the previous version. :thumbup: One thing I find annoying is that this page - in common with seemingly every other ME/CFS webpage out there - links to other, general pages about sleep and pain management which recommend exercise. Something the ME/CFS page just told you to...
  5. Ravn

    New Sleep Poll

    This. When well rested I have a sort of bi-phasic sleep, i.e. go to sleep ok, wake around 3am for a while, go back to sleep, wake around 5.30 am. Don't feel refreshed exactly but definitely somewhat better than the evening before. With PEM it's a very different story: I struggle to get to...
  6. Ravn

    Using Plasma Autoantibodies of Central Nervous System Proteins to Distinguish Veterans with GWI from ... Controls. Abou-Donia, Klimas 2020 RETRACTED

    Question 1: what is GFAP? Question 2: what relevance would elevated GFAP autoantibodies have & could that really be a biomarker (if the finding stacks up)? Have only read the abstracts of the following. https://www.sciencedirect.com/science/article/abs/pii/S0955067415000137...
  7. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Heads up to anyone in the Tauranga region and fit enough to attend meetings. The Neurological Foundation is running a series of events, one of which is a talk by Dr Joanne Lin called "Uncovering the secrets of neuroinflammation", on 22 October. Dr Lin used to work in Jarred Younger's lab...
  8. Ravn

    Using structural and functional MRI as a neuroimaging technique to investigate CFS/ME. Almutairi et al. 2020

    There seems to be a fashion for systematic imaging reviews. Here's a similar one (link below). Both conclude current studies are too few, too small and too varied to draw any firm conclusions. Only one of the reviews feels the need to repeatedly point towards the one study that claims to have...
  9. 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...
  10. 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...
  11. 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...
  12. 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:
  13. Ravn

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

    Lily Chu making sense, as usual.
  14. 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...
  15. 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...
  16. 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...
  17. 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.
  18. 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...
  19. 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?
  20. 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...
Back
Top Bottom