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  1. Hutan

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    And are you feeling much improved for it?
  2. Hutan

    NIH study - where to start?

    One of the other biggest concerns @cassava7 was the small size of the cohorts. For most of the studies, the size is considerably smaller than the headline sizes of 27 controls and 17 people with ME/CFS. Often more like 8 or 10 people in each group. Not many people actually made it to the...
  3. Hutan

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I think there is quite a bit of semantics, which is not to say that it's unimportant. I define things a bit differently to you. I'd say 1) an underlying abnormal response to exertion:some unknown molecular/cellular/neurological/whatever mechanism which in itself isn't directly perceptible by...
  4. Hutan

    Review Long Covid in Aotearoa NZ: Risk assessment and preventive action urgently needed, 2024, Kvalsvig et al

    Nice feedback from that commentator. The overwhelming feeling I get from reading that roll is that governments are going to continue to deny the problem. Tackling it is just too difficult. I mean - better ventilation in schools? There's not even enough money for school infrastructure without...
  5. Hutan

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Thanks very much Dakota. That still leaves a lot of room for Walitt in that task. As lead researcher he must have approved it, and probably commissioned the test. Developing the version of the test used the study is of relatively little consequence once a decision to do this sort of test was...
  6. Hutan

    Students investigate effect of immune system of Long COVID patients on muscle cell function

    The same thought crossed my mind. But surely they would also inject mice with IgG from healthy people as controls?
  7. Hutan

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    It took me a while to get what I think Jonathan saying, as lots of people risk painful outcomes in order to achieve something worthwhile. And I had significant PEM after the first PEM and I happily turned up for the second CPET (although at that time I didn't have PEM). I think you are saying...
  8. Hutan

    The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

    I've just been re-reading a bit of the thread discussing the MEA project headed by @sarahtyson. And I see that @bobbler pointed out that one of the researchers on that study was involved in the development of this scale
  9. Hutan

    News from Australia

    Yes, thirding this. Really helpful presentations. It is way past time that Australia had some decent clinical guidelines for ME/CFS.
  10. Hutan

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Well, there is the RER measure, which is taken to be a measure of effort. So, if it is the same, around 1.1, then I don't believe it is possible to dismiss the finding as just being the result of less effort. Yes, I don't think enough attention is paid to normalising energy expenditure prior...
  11. Hutan

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    A number of posts about 'whether 2XCPETs are an objective indicator of PEM' and 'the definition of PEM' have been moved to Post-Exertional Malaise - a discussion including defining and measuring PEM
  12. Hutan

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Gosh. In my non-exercise physiologist way, I'll give you a personal example to try to explain what I am saying. I participated in a two day CPET. I did the first CPET in the early afternoon. Later that night, I had a period of PEM for some hours - crushing pain, feeling ill, chills, glands...
  13. Hutan

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Heading off topic, but just because Workwell say something, doesn't necessarily make it true. The 2xCPET does seem to show an abnormal reaction to exercise in ME/CFS. A reduced workrate at Anaerobic Threshold on the second test isn't what I and most people call PEM though. That reduced...
  14. Hutan

    Peripheral Mechanisms of Ischemic Myalgia, 2017, Querne et al

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5743676/ Abstract Musculoskeletal pain due to ischemia is present in a variety of clinical conditions including peripheral vascular disease (PVD), sickle cell disease (SCD), complex regional pain syndrome (CRPS), and even fibromyalgia (FM). The...
  15. Hutan

    Review Long Covid in Aotearoa NZ: Risk assessment and preventive action urgently needed, 2024, Kvalsvig et al

    Looks to have been well done. A number of familiar names there :thumbup:
  16. Hutan

    Review Long Covid in Aotearoa NZ: Risk assessment and preventive action urgently needed, 2024, Kvalsvig et al

    https://www.phcc.org.nz/briefing/long-covid-aotearoa-nz-risk-assessment-and-preventive-action-urgently-needed On the Public Health Communication Centre Aotearoa Amanda Kvalsvig, Anna E. S. Brooks, John D. Potter, Mona Jeffreys, Julie Bennett, David Davies-Payne, Jonathan Kennedy, Dianne...
  17. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    There was an interview with epidemiologist Michael Baker on First Up on Radio NZ this morning. Michael Baker has been a reliably good commentator throughout the pandemic. He and a number of others have authored an article on the impact of Long Covid that will be available today - it sounds to...
  18. Hutan

    Close your eyes and see – stroke sequelae versus functional neurological disorder in a physician 2023 Weil et al

    I see from SNT's bolding that he has also noted the fact that this author, even after going through this awful process of having significant pain dismissed as a psychological reaction, and even after being motivated enough to write up her experience in a paper and reflecting on the issue, still...
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