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  1. 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...
  2. 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...
  3. 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...
  4. 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.
  5. 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?
  6. 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.
  7. 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...
  8. 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.
  9. 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...
  10. 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...
  11. Hutan

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

    I can't see how just the probability of choosing a hard task is a measure of effort preference. For example, what's the point of choosing a hard task with a value of $1.78 and a probability of 0.12? If you are choosing lots of those low-value high-effort tasks, then your effort preference must...
  12. Hutan

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

    oh, thank goodness for that. posting just to bring this to the attention of more people
  13. Hutan

    News from the USA, United States of America

    Watching the Biden State of the Union speech - he's just promised 12 billion for women's health research if he gets another term.
  14. Hutan

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

    Yes, of course they should acknowledge the substantial overlap in this 'effort preference' measure between the two groups - because that's what the data showed. My question was more about what the investigators then take from that fact. If lots of ME/CFS people, not just a couple of outliers...
  15. Hutan

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

    I agree with others responses to that reply from the NIH. The letter writer clearly knows nothing about how weak that supposed result actually is. :thumbup: I would like to know if the investigators agree that the performance of around half of the ME/CFS cohort actually did not look much...
  16. Hutan

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

    Some posts that were heading off-topic have been moved to the main thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al
  17. Hutan

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

    A lot of the time, I can't believe that we actually have to take this nonsense of a study seriously. Yes, we need to know what the participants were told, and when it was decided that game play like HVF's was not acceptable. I still think, reading between the lines of the information we have...
  18. Hutan

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

    I thought it might be useful at this point to remind ourselves what is said about the EFFrT experiment in the paper: One point I'd make from this is that Fig 3e shows the relationship between time to failure in a grip test and proportion of hard task choices. This could be an alternative...
  19. Hutan

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Re the very recently set up Prudence Trust that has been funding Crawley and has Wessely on the advisory panel handing out the grants: It seems to give out small sums to lovely sounding mental health charities and then each year it gives out great whacks of money e.g. 600,000 pounds each, to...
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