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  1. Hutan

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    I've now read the paper and I found it interesting. Although the participants had a range of Long Covid symptoms, it was notable how many of them had symptoms that sound like ME/CFS, including an increased heart rate and trouble maintaining a stable temperature. The participants had tried all...
  2. Hutan

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    Do you mean this finding, @rvallee? The finding that people who already face unfair discrimination in the medical system are likely to have an even harder time when they have a condition that primarily involves self-reported symptoms such as pain and fatigue and has no biomarker seems...
  3. Hutan

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    It's nearly really good. But there are some problems, mostly in this paragraph: I'm not sure what 'projected rates of recovery' are, but rates of recovery from ME/CFS are relatively high in the first year, even if you don't count any illness that doesn't last for 6 months after onset...
  4. Hutan

    Cerebellar Excitability Regulates Physical Fatigue Perception, 2023, Casamento-Moran et al

    Figure 1F is the reported levels of fatigue with the points for the fatiguing exercise shown in purple, and the points for the control exercise in green. There was a baseline measurement and five sets of exercises, and then recovery, with measurements of grip strength before and during the...
  5. Hutan

    Functional Neurological Disorder (FND) - articles, social media and discussion

    He's not directly making that argument (that if the trigger is known, it can't be ME/CFS). From what he said, he seems fairly fixed on the idea of viral persistence or the spike protein causing the Long Covid problems. That is, something unique to the SARS CoV-2 virus is causing the problems...
  6. Hutan

    Cerebellar Excitability Regulates Physical Fatigue Perception, 2023, Casamento-Moran et al

    It's interesting stuff. But the study is built on people's reported levels of fatigue after a fatiguing task. The reporting involves picking a number between 0 and 100. Just as with pain, people's rating of their fatigue will almost certainly be influenced by cultural factors and any...
  7. Hutan

    Cerebellar Excitability Regulates Physical Fatigue Perception, 2023, Casamento-Moran et al

    Cerebellar Excitability Regulates Physical Fatigue Perception Abstract Fatigue is the subjective sensation of weariness, increased sense of effort, or exhaustion and is pervasive in neurologic illnesses. Despite its prevalence, we have a limited understanding of the neurophysiological...
  8. Hutan

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Yes. I think that's fair. Within the interview, he wasn't completely consistent in his endorsement of Long Covid science. Sometimes things were settled and other times there was a bit more doubt. I think that stance that you mention, some caution over each individual piece of proposed Long...
  9. Hutan

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Thanks @dave30th. Great that you put the question of whether Putrino stands behind his contention of 'settled science' to him. And, it seems he largely does. His threshold for belief of a whole range of very preliminary findings seems a lot lower than his threshold for belief that some of...
  10. Hutan

    Cardiopulmonary, Functional, Cognitive and Mental Health Outcomes Post-COVID-19, 2023, O’Sullivan et al

    So, the four groups: hospitalised (H) community managed infection, ongoing symptoms at 5 months (C-S) community managed infection, recovered at 5 months (C-R) healthy controls The sample sizes are fairly small for this sort of study, especially considering the male skew. Weirdly, apart from...
  11. Hutan

    Hello! Fitness tracker recommendations?

    If you had your own monitor, you could use it at home in relaxed settings. You might find that the anxiety goes with repeated use. I haven't seen what you have posted here as obsessing. When there is something, a tool, that might help us gain some control over our illness, I think it's...
  12. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    Yeah, that was particularly bad. It was a cut and paste from the 'pad a few minutes with generic fluff' file. The junior policy officer who was given the job of writing that clearly didn't have a clue, didn't have time and/or didn't care. I agree, nearly all of the MPs who engaged with the...
  13. Hutan

    mTOR activation, ATG13 inactivation and suppression of autophagy

    Yes, we have a few threads on rapamycin e.g. Rapamune / Rapamycin/ mTOR Results reported by members are variable but don't seem to be of the 'this cured me' type. And there's quite a lot of downside - an immune-suppressor in a pandemic...
  14. Hutan

    mTOR activation, ATG13 inactivation and suppression of autophagy

    Ah yes, that makes sense, I got tangled up in finding a statin referred to as SIM10 and making leaps from there. There's this paper https://pubmed.ncbi.nlm.nih.gov/23817226/ where the statin inhibits mTOR and increases autophagy. As you say, the opposite result from what these researchers did...
  15. Hutan

    Hello! Fitness tracker recommendations?

    Have you tracked your blood pressure at all? Given that is part of the cardiovascular system's response to the stress of being upright, it might tell you something. I found that my pulse pressure narrowed drastically on some days, typically while standing on one spot, such as doing the dishes...
  16. Hutan

    News from Austria and Switzerland

    New paper out Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland 2023 Tschopp et al Results of a survey of members of the Swiss ME/CFS Association.
  17. Hutan

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Some posts and a link to a video of the part of the call presented by Avik Roy and Gunnar Gottschalk have been moved to a discussion thread: mTOR activation, ATG13 inactivation and suppression of autophagy
  18. Hutan

    mTOR activation, ATG13 inactivation and suppression of autophagy

    That diagram from the video shows the rationale for the use of the Sim501 compound, in their attempt to make a drug induced model of PEM, which is the thing I wasn't sure about from my first listen. When mTOR is inactivated, ATG13 participates in processes leading to autophagy. When mTOR is...
  19. Hutan

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Brilliant work @Arvo and others, thank you for making it clear how concerning the allocation of funds to the Rosmalen team is. Aside from letters from individuals to ZonMW and the Ministry of Health, are there other things that can be done by the international ME/CFS community to try to stop...
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