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  1. Hutan

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    I'm late to the party, but a pile on of congratulations seems in order. Well done Trish, and my thanks to Sonya for the decisive action.
  2. Hutan

    What stops you getting involved in Patient and Public Participation in research?

    I think finding out about opportunities is a major barrier to participation. Reduced capacity to do things is obviously a barrier to participation. That makes it especially important that there is information to allow an accurate weighing of the benefits and costs. Lack of that information is...
  3. Hutan

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

    Interesting, thanks Mij. Notable that having Long Covid was said by the judge to have given rise to a functional neurological disorder. That's slightly weird - I would have thought the hypothesis would be for FND to be the result of Covid-19. Long Covid (the persistent symptoms) essentially...
  4. Hutan

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thank you forestglip. From a quick google, those top metabolites (that were lower in the ME/CFS samples) all seem to be associated with defence against pathogens. Certainly worth having more of a look at them.
  5. Hutan

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    @forestglip, thank you. How does the correlation work? All the correlation signs are negative. Is there a way to tell if a metabolite is up or down in the ME/CFS people?
  6. Hutan

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    The Results section is terrible. There is no raw data given, the outcomes are all hidden behind models supposedly calculating outcomes with regression equations based on baseline data. Totally opaque. Sex is a variable in the equations, and I don't think they even tell us which is higher, male...
  7. Hutan

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    They struggled to get the planned cohort - which suggests word is getting around. As well as the three patients excluded or who withdrew, there is missing data in lots of the measures. There is missing data for six patients' baseline 6 minute walking data. Always a bit worrying when the data...
  8. Hutan

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    Worth noting the people involved. They all should be embarrassed. Journal of Psychosomatic Research Stefan Salzmann ab; Mirko Herrman c; Markus Henning c; Lisa Schwertner c; Frank Euteneuer d; Lara Goldau a; Celine Bahr a; Christoph Berwanger c; Winfried Rief a a Clinical Psychology and...
  9. Hutan

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    Incredible The people who expected to get worse with the BPS treatment got worse. The people who expected to get better with BPS treatment got worse. Conclusion: 'Managing patient expectations is crucial for optimal rehab outcomes." (e.g. lower the bar for "success") Look at the title...
  10. Hutan

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    @Thanks @chillier. Yes, what you have said makes sense to me. I'm not yet completely clear whether the situation is 1. most likely, the BCHE values for both males and females PwME sit within the 95% confidence interval for healthy people, albeit the male PwME data is mostly above the healthy...
  11. Hutan

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    BCHE The z score for BCHE in ME/CFS men is over 5 (for women it's heading towards 2). Given the z score of 5, I'm not understanding your hypothetical scatter plot. Shouldn't the ME/CFS data points be a lot higher? I could easily be misunderstanding something there. I'm quite keen on the...
  12. Hutan

    Follow-Up of a Cohort of Patients with Post-Acute COVID-19 Syndrome in a Belgian Family Practice, 2022, Jamoulle et al

    From the 2023 poster, 102 patients from family medicine consultations (from one practice? in Charleroi, Belgium). 66.3% female As I understand it, the SPECT scan with that tracer can show areas of relative hypoperfusion. I'm not sure if SPECT scans can show decreased brain perfusion compared...
  13. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    This was interesting, for beyond the Gulf War: They talk about how smoking can reduce PON1 efficiency and how that could explain some modification of risk associated with being a smoker. They also talk about how the pyridostigmine bromide may have increase vulnerability for both RR veterans...
  14. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    I'm sorry, I'm still confused how they determined PON1 status and what they mean by it. I think they just mean the functional phenotype. Discussion But, the good news - it seems their findings do fit with what is known about the biology of the PON1 forms. That's something to hang onto. The...
  15. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    3.4 Association of exposures with GWI case status Table 4 shows that a range of exposures were associated with GWI case status. E.g. 86% of GWI cases heard chemical alarms sound versus 64% of controls. Adjusted odds ratio of 1.7 83% of GWI cases took the pyridostigmine bromide versus 60% of...
  16. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    Results Demographics Females accounted for 18% of GWI cases and 15% of veteran controls. I don't know if the selection of the cohorts was on a population basis or if there was some selection If PON1 status is determined by PON1 function, then of course PON1 status is going to vary by PON1...
  17. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    PON1 status assays I think they must have identified the actual PON1 genotype, but I'm not 100% sure. Ed. I don't think they determined PON1 genotype - reference 35 only talks about determining PON1 function using substrates. They definitely determined the function i.e. the enzyme activity in...
  18. Hutan

    PON1 Status in Relation to Gulf War Illness: Evidence of Gene–Exposure Interactions from a Multisite Case–Control Study…, 2024, Steele, Klimas+

    Methods 398 veterans from three pre-existing cohorts. 295 GWI cases and 103 controls That sentence is slightly worrying. Hopefully the Gulf War veteran controls were actually healthy and not in some no mans land of being ill but not quite ticking the right boxes to be considered to have GWI...
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