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  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. 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.
  7. 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...
  8. 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...
  9. 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...
  10. 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...
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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...
  19. 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...
  20. 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...
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