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  1. Snow Leopard

    Using Heart rate monitoring to help with pacing.

    Yes. The alternative is a boring life not worth living. Sometimes the sacrifice is worth it. Also, that fog horn sounds like it would be super annoying.
  2. Snow Leopard

    New article in the spectator mentions ME/CFS and death threats.

    Are they saying that violent behaviour is underrepresented in people with chronic illness and pain as that's what I'm seeing from this article. ;)
  3. Snow Leopard

    Using Heart rate monitoring to help with pacing.

    I think that is wrong too (if you are talking about muscular pain itself), I get a similar amount of pain after 500 steps as 10,000 steps when walking. (due to ankle weakness, in turn due to motor unit loss, this is not necessarily a ME/CFS thing) the brain doesn't seem to notice or care how...
  4. Snow Leopard

    Using Heart rate monitoring to help with pacing.

    Because the whole system falls apart when the signals are blocked. If the brain was still making predictions in the absence of signals, it would try and compensate in some way, but it doesn't. You know that is not what I mean. The brain is simply not counting how much kj is utlised or how much...
  5. Snow Leopard

    Heat vs. Fatigue: Hyperthermia as a Possible Treatment Option for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2025, Hochecker

    I feel cold all the time, even at 20C, 35C sounds like... Well it's too hot, but high 20s sounds nice.
  6. Snow Leopard

    Using Heart rate monitoring to help with pacing.

    Exertional thresholds definitely exist, but it is task specific. I can't predict it at all from heart rate alone. But only heart rate while doing a specific task in a very specific way. It has nothing to do with the heart rate itself, but the specific nature of the use of the muscles in my...
  7. Snow Leopard

    I'm able to exercise but am still disabled

    This might be controversial but I believe the range of different presenting symptoms across ME/CFS indicates different underlying pathology even if there is also some common pathology as well. Creekside has provided lots of exercise related ancdotes that are atypical. My experience may be...
  8. Snow Leopard

    I'm able to exercise but am still disabled

    Different tasks have *vastly* different demands regardless of "unaccustomed" or not. When we're "accustomed", we might just pare back our effort because we have more idea of what is too demanding or not.
  9. Snow Leopard

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    That sounds great, I'd love to be a fly on the wall for some of those hypothesis/method discussions.
  10. Snow Leopard

    Use of antidepressants for/with ME/CFS?

    I cannot stand tricyclics at all, too many side effects even at low doses. SSRIs have shown to be largely ineffective for depression in double blindied studies of ME/CFS patients. MAOIs seem to be the ugly duckling that doctors are reluctant to prescribe, yet they have the best evidence base.
  11. Snow Leopard

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    I feel the value of apps of any kind is greatly overstated. Apps are mostly just superflous data and busy work (that reduces our spoons for other tasks). I know some people feel differently, but...
  12. Snow Leopard

    Healthcare experiences of young people with CFS/ME in their own words, 2025, Watson & Segal

    All research is biased in some way, the key is to be transparent about it. The experience map/diagram is not far off what my experience was when young, so... I agree there is still a problem in overstating the value of a diagnosis/specialist clinic given the lack of effective treatments.
  13. Snow Leopard

    Impact of COVID-19 & 2021 NICE Guidelines on Public Perspectives Toward ME/CFS: Twitter Analysis, 2025, Khakban et al (Jason Busse)

    He has a PhD, presumably in that. https://www.researchgate.net/profile/Jason-Busse It is indeed misleading.
  14. Snow Leopard

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    The critical point is that the signals are generated peripherally, either at the nerve endings or sensitisation in the DRG. This is not central sensitisation or supraspinal generated signals. I am going to say yes to this too. Higher cortisol reduces my symptoms somewhat and my working model...
  15. Snow Leopard

    I'm able to exercise but am still disabled

    I can exercise on the bike, walk for quite a while (with PEM the next few days), my VO2Max is okay but I cannot run or even jog for more than a very short distance. Exercise also causes OI as a PEM symptom. My 6mwmd is like ~850m.
  16. Snow Leopard

    Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individuals with Chronic Fatigue Syndrome, 2015, Brown+

    Just FYI, there was a discussion on the other forum: https://forums.phoenixrising.me/threads/abnormalities-of-ampk-activation-and-glucose-uptake-in-cultured-skeletal-muscle-cells-from-individua.36688/
  17. Snow Leopard

    Malate initiates a proton-sensing pathway essential for pH regulation of inflammation, 2024, Chen et al.

    A bit of both but you are correct in suggesting it is mostly the latter. It just seems confusing to me that it would be an important interaction.
  18. Snow Leopard

    Malate initiates a proton-sensing pathway essential for pH regulation of inflammation, 2024, Chen et al.

    I don't quite understand the biochemistry of the original study, Bip is a HSP/chaperone that does other useful things and BiP agonising IRF2BP2 seems kind of random. I can't find other IRF2BP2 studies that talk about binding BiP at all, nor the converse.
  19. Snow Leopard

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

    "Being retired" seems to mean more outspoken in the media and other venues.
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