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  1. hibiscuswahine

    Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

    I think there is a potential difficulty for me in the description of exercise. Are we talking about aerobic exercise like doing specific "exercise" like gym, cycling, running vs a relaxed walk rather than a power walk etc or strenuous activity? eg heavy housework like vacuuming or gardening I...
  2. hibiscuswahine

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Thank you, I missed that one. It is good to see they have replicated her work but still unclear the clinical significance which may be made clearer in the preprint you mentioned on a dose response. Could it be a situation of ongoing active inflammatory response in some people with LC? (something...
  3. hibiscuswahine

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    I recall that an independent laboratory in the north of England, (independent of Pretorius et al), was going to try to replicate her work. I think the lead researcher was a haematologist. That was some months ago and not seen the results on here My concern with this theory is there is no clear...
  4. hibiscuswahine

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    I have met clients with clinical alcohol intolerance due to a genetic defect in the aldehyde dehydrogenase enzyme. They show facial flushing and rapidly become nauseous, faint, headaches etc. The flushing is very obvious to others and they usually never drink again. I was able to drink alcohol...
  5. hibiscuswahine

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    That would require some insight into why the ME community are upset by his views, something PG has shown on many occasions not to have. To label us as anti-recovery activists is very inflammatory. I know some people recover. But I know many more that didn't and it is medical profession...
  6. hibiscuswahine

    Catastrophizing, time to ditch the term? - ME/CFS Skeptic blog

    Great article, not much to add. Being a psychiatrist and I did practise CBT for some years, I can only add this from my experience with clients with mental health disorders and the many times I helped people negotiate the sudden change in their life from developing a major mental disorder, some...
  7. hibiscuswahine

    Sophia Mirza

    Golly, UK psych units sound quite different to NZ ones. Mental health nurses don't barge into people's rooms. Units are run much the same as medical wards but the patients are ambulatory. They do wake clients up to eat meals etc. otherwise they wouldn't get fed. But they can refuse a meal and...
  8. hibiscuswahine

    Guardian article on origins of CBT : I have OCD. Some cognitive behavioral therapy techniques were totally wrong for me, April 2024

    @JellyBabyKid In NZ, DBT skills are being taught at primary school eg.mindfulness, breathing, emotional regulation and distress tolerance skills. It is integrated across the curriculum and has cultural input from tangata whenua (Maori). integrating-mindfulness-into-learning Relationship skills...
  9. hibiscuswahine

    Is PEM a disturbance in the transmission of sensory information?

    @Haveyoutriedyoga yes, part of the neuropsychological examination is distractibility, the ability to maintain attention (sort of like alertness, preparedness) when asked to do a cognitive task. If the clinical psychologist (or psychiatrist who does more simpler tests for cognition), understands...
  10. hibiscuswahine

    Is PEM a disturbance in the transmission of sensory information?

    @SNT Gatchaman Though the structural problem underlying dysfunction may have been very difficult to delineate ex vivo. Yes good point. Nice study. (Translation: Ex vivo - out of the body, post mortem study, that stirred a few brain cells on a rainy afternoon :laugh:)
  11. hibiscuswahine

    Is PEM a disturbance in the transmission of sensory information?

    I think there are central mechanisms involved but there is not enough evidence. I don't think it is a problem with the structure and function of the peripheral nervous system. Neurology has not been able to delineate it. The dorsal ganglion finding is interesting and I do recall this from a few...
  12. hibiscuswahine

    Muscle oxygenation [as assessed by NIRS - Near Infra-Red Spectroscopy]

    So how is the experiment going @SNT Gatchaman? Have you done it on some controls? You hinted at a study. Is it a go-er?
  13. hibiscuswahine

    What does deconditioning look like? - ME/CFS Skeptic blog

    This is awesome! very well written. And reading it, some of these studies are maybe where ME Clinicans have got their information about reduced blood volume in ME? I don't know, but the 20% reduction is often quoted by USA clinicians.
  14. hibiscuswahine

    Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

    Reduced fitness and muscle function lead to fatigue even in everyday activities. That is incorrect. (well most is incorrect but this is just a small sampling of the rubbish) So did the Swedish ME association provide information and then it was completely reworked by the people doing the...
  15. hibiscuswahine

    A systematic cognitive behavioral therapy approach for pediatric disorders of gut-brain interaction, 2024, Chancey et al

    That sentence in the abstract is too long...A moderation effect..I can't read the paper so what does this mean? a moderate effect? it moderates? OK Google tells me it is a term in statistics and regression analysis, moderation (also known as effect modification) occurs when the relationship...
  16. hibiscuswahine

    Trial Report Physiological presentation and risk factors of long COVID in the UK using smartphones and wearable devices…, 2024, Stewart+

    I haven't read all of the paper but this popped out to me first: self reported valence is one of the metrics gathered in this study. Valence also known as hedonic tone, is a characteristic of emotions that determines their emotional affect (intrinsic appeal or repulsion)...
  17. hibiscuswahine

    Maeve Boothby O'Neill - articles about her life, death and inquest

    No, not specifically, we were taught that some people developed post infection fatigue syndromes (ME) but little was known about why they occurred other than it was some sort of immune response. The year I went to med school, 1985, NZ had a mass outbreak of a post infectious syndrome in 1984. It...
  18. hibiscuswahine

    Disorders of gut-brain interaction: Highly prevalent and burdensome yet under-taught within medical education 2022 Simons et al

    I think they are out to save money for the health service. They seem very clear they will try anything without good proven evidence. They also associate non-GI symptoms of this with somatisation (which is a psychiatric term they are now throwing around like confetti!). So add a few symptoms from...
  19. hibiscuswahine

    UK lawyer for suing for medical negligence of #ME. No win no fee. Please share far and wide.

    @Paraprosdokian I agree with your approach as a layman with some understanding of medical idemnity. I think being able to successfully claim on your Medical Insurance may be difficult? I know, in NZ, of one psychiatrist who is basically a "psychiatrist for hire" and is also...
  20. hibiscuswahine

    "Severe ME/CFS and long Covid in secondary care: guide to management during patient hospital stays" (ANZMES)

    Yes, this is the current guidance in NZ. When I went for an eye op under GA a few years ago, I told the anaesthetist at my preop assessment that I had ME and he seemed to know straight away that we are sensitive to some anaesthetic effects and would chose an appropriate general anaesthetic...
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