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  1. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    If only that were true. Cytokines IL1β, IL6, TNFα & serum cortisol may not constitute reliable biomarkers to identify [PASC], 2024, Fleischer, Kleinschnitz et al. yes
  2. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    All sorts of people are currently deciding; I'm suggesting giving those people some sensible guidelines. For example, Australia's NHMRC was giving out funds for Long Covid - Andrew Lloyd (a prominent BPS researcher) was on the panel to decide what research was funded. If there were some...
  3. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    Many studies, some good and some bad, have been promoted by patient organisations. DecodeME is a good one. There still has to be screening of participants. Biobanks and patient registries are a source of research participants. Those two sorts of organisations must surely have some...
  4. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    Yes, it has to have good methodology to provide answers, even if the answers are just 'this isn't different' or 'this doesn't work'. Getting the good methodology may need the input of a patient advisory group, to check that a plan is feasible. It might involve being aware of conflicts of...
  5. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    Of course politics is part of getting science done. If we aren't thinking about politics and managing the issues, if we aren't part of the conversation, funding will go to other diseases, and to researchers who may do more harm than good. I don't think we need to sit passively accepting...
  6. Hutan

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Yes, although from Fig 4, it's even worse than that:
  7. Hutan

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

    I don't think it's necessarily a weakness given their stated desire to reduce the possibility that deconditioning and other consequences of years of a sedentary lifestyle might obscure results. The selection leaves a lot of room for followup studies of course, but I'd call it a limitation...
  8. Hutan

    Making a 'Charter for Ethical ME/CFS Research'

    Copying from a post I made elsewhere, this idea arose in forum committee discussions about researchers' responsibilities to act ethically. ..What if we and/or patient organisations developed a charter for all ME/CFS (and ME/CFS-like LC) researchers or research studies? There could be a...
  9. Hutan

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

    It's an idea that surfaced in a S4ME committee discussion regarding an incident where a researcher funded by patient donations pulled out the usual tropes of hysteria and catastrophising. Thread to discuss it here: Making a 'Charter for Ethical ME/CFS Research'
  10. Hutan

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

    We've discussed the issue of patient selection before, but I think MEAction are not helping by suggesting the cohort of patients was unrepresentative. There were criteria such as time since onset, infectious onset and severity that could have been something different, but were perfectly...
  11. Hutan

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

    I think this might be an area where we do have some control. What if we required researchers to declare 'the score'? What if patient organisations developed a charter for all ME/CFS (and ME/CFS-like LC) researchers or research studies? There could be a commitment to a criteria including PEM...
  12. Hutan

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I'm floundering around on that question, hopefully someone who knows about this will comment. This paper might help: Evaluation of Central and Peripheral Fatigue in the Quadriceps Using Fractal Dimension and Conduction Velocity in Young Females But, my impression is that some of what has been...
  13. Hutan

    Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19, 2024, Hanson et al

    Maybe there's something going on in A there (asymptomatic group), the blip on the right hand side of the normal distribution of the fold changes in iron homeostasis genes relative to the healthy controls? Maybe there could be some iron issue accounting for the onset of ME/CFS-like LC? But...
  14. Hutan

    Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19, 2024, Hanson et al

    Study is a prospective one, healthy controls and then five groups of Covid-19. A is asymptomatic; B is mild infection; C-E is increasing severity.
  15. Hutan

    Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19, 2024, Hanson et al

    That paragraph makes it sound as though the iron problems are an outcome of serious Covid-19 i.e. in hospitalised patients. Maybe not relevant to ME/CFS-like LC?
  16. Hutan

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    To discuss the idea of a research misconduct complaint about the study, go to the main study thread. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al If there's enough interest to take it forward, a thread in advocacy could be made.
  17. Hutan

    Scots scientists uncover DNA 'switch' which affects anxiety levels

    I tried to pick my way through the abstract. I'm not sure about their mice work - there seemed to possibly be some post-hoc subsetting of samples (male/female mice; different parts of the brain) in order to find a result. I think this might be a takeaway point, from the article: Also worth...
  18. Hutan

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Yes, I came to the same conclusion - there didn't seem to be much difference in a tendency to do back to back tasks.
  19. Hutan

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Well, I've been thinking about what you wrote, and thinking that you are right. It depends what you do. Yeah, ideally as Eddie says, you'd just non-complete the easy tasks and get on to the high value hard tasks. If you don't believe that you can intentionally not complete a task, it is...
  20. Hutan

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I don't think that's right. First because we believe that the participants were told that only two rewards would be randomly selected. And second, even if the participants didn't really understand the consequences of that payout structure, the experiment was only 15 minutes long. If you do the...
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