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  1. Hutan

    Trial Report Clinical and Laboratory Characteristics of Fatigue-dominant Long-COVID subjects: A Cross-Sectional Study, 2024, Lee

    Korean team, there's a paywall. It appears to be more cortisol nonsense. We know that cortisol levels vary, within normal ranges, with physical activity levels and that these adapted levels can change in a matter of weeks. If someone is routinely having physical stress, they will have higher...
  2. Hutan

    Fatigue as hallmark of Fabry disease: role of bioenergetic alterations 2024 Gambardella et al

    I have to stop, but this looks interesting, if only as a differential diagnosis. These researchers might be interested in collaborating with the DecodeME team to see if many people with an ME/CFS diagnosis have indications of problematic gene variants in that Xq22.1 region? @Andy, @Simon
  3. Hutan

    Fatigue as hallmark of Fabry disease: role of bioenergetic alterations 2024 Gambardella et al

    It sounds as though there are some treatments. Nice recognition of the debilitation caused by fatigue CPET
  4. Hutan

    Fatigue as hallmark of Fabry disease: role of bioenergetic alterations 2024 Gambardella et al

    Genetic screening is the key to diagnosis - but how many people presenting with vague symptoms get offered that?
  5. Hutan

    Pathogens associated with triggering ME/CFS - discussion thread

    Par for the course when it comes to the development of ME/CFS information resources.
  6. Hutan

    Pathogens associated with triggering ME/CFS - discussion thread

    I've been asked to comment on the list above. The authors are trying to list some diseases that may acutely trigger (ME/)CFS, rather than listing possible causes of ME/CFS. I think some of the diseases on the list have been discussed in ME/CFS literature as a possible cause (through...
  7. Hutan

    Metabolic Fingerprinting for the Diagnosis of Clinically Similar Long COVID and Fibromyalgia ..., 2023, Hackshaw et al.

    From my limited understanding of the approach, it seems fine. But, it's the replicability that matters, and identifying biochemicals in the spectral signatures that lead to biologically plausible mechanisms. Yes, my impression was that this latest study didn't strongly replicate the findings...
  8. Hutan

    Metabolic Fingerprinting for the Diagnosis of Clinically Similar Long COVID and Fibromyalgia ..., 2023, Hackshaw et al.

    The authors are from Spain and the US. There's a weird bit about opioid use: There was no matching of subjects by gender and BMI: LC: 18 males; 32 females....... mean BMI 29.5 Fibromyalgia: 50 females ........ mean BMI 31.6 Controls: 4 males, 2 females .......... mean BMI 25 And, only 6...
  9. Hutan

    ME/CFS Medical Education Campaign UK - UK website and blog by Katie Johnstone

    BACME appears to be a 'professional organisation', as in, an organisation set up to support a certain group of people who earn their living in a particular way, like an association of engineers, or occupational therapists. Do professional organisations normally qualify for grants from that NL...
  10. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    Thanks @SNT Gatchaman. The thymus is surely a neglected organ - it gets none of the glory that the heart, or even the kidney, gets. A lot of the second hour of the video is about titanium dioxide. Titanium dioxide can be in a wide range products, from toothpaste to dairy products. There...
  11. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    At the one hour mark there are some comments on gut permeability and about the 'Celltrend' adrenergic autoantibodies. "All these ME/CFS and POTS people had these adrenergic autoantibodies.." Actually Cyber, before a theory is built on the presence of the autoantibodies, I think we have to...
  12. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    Mold at 50 minutes. A list of specific symptoms that are supposed to be associated with mold is given. Then VOCs - also specific symptoms given (stimulated feeling). No evidence given for these associated symptoms at this point. Third category that Cyber believes is a major driver of CFS...
  13. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    30 minutes in, there's a discussion of factors that might damage the epithelial barrier. This is also discussed in Cybergreen91's post above. Chemical exposure, viral infections, connective tissue disorders (that affect the tight junctions between the epithelial cells). If the epithelial...
  14. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    27 minutes in, there's a discussion about the Hornig 2015 paper which reported high levels of inflammatory cytokines in people who had had CFS for less than three years and low levels in people who had had the illness longer. It's a nice story, but it has not really been replicated. I think we...
  15. Hutan

    The Role of Insoluble Nanoparticles and Other Environmental Triggers in Chronic Illness

    Welcome to the forum @Cybergreen91. For sure, environmental factors may be part of the cause, at least for some people. We only have to look at Gulf War Illness, which is at the very least 'quite similar' to ME/CFS, and the strong indications of environmental causes for that syndrome, to see...
  16. Hutan

    Studies looking at PEM - have they measured PEM or just the response to the challenge used?

    Yes, defining PEM has been difficult, and is core to finding out what causes it. To give an example, I participated in a 2xCPET. On the night after the first CPET (and plane travel), I had a bout of what I call PEM. This was feeling very unwell, deeply exhausted, with my whole body feeling as...
  17. Hutan

    Confirmation of COVID-19 infection status & reporting of [LC] symptoms in a population-based birth cohort: No evidence of a nocebo effect, 2024

    Isn't that an odd definition? Surely 'the induction or worsening of symptoms induced by ...an active therapy' is the production of side effects. Some of those side effects may well be entirely real and explicable. I think this idea that nocebo effects are more common in women is probably...
  18. Hutan

    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Here are links to the research priorities, in 8 groups: Here's an example - the Nervous System Priorities: There's a seven minute video that tells you how to provide feedback. https://ninds.ideascalegov.com/a/pages/mecfsguide
  19. Hutan

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

    We now have a thread for discussion about this NIH request for feedback on ME/CFS research priorities: 2024: USA NIH NINDS ME/CFS Research Roadmap - input on research priorities sought by 8 March 2024
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