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  1. Hutan

    Poor long-term outcomes and abnormal neurodegeneration biomarkers after military traumatic brain injury: the ADVANCE study, 2024, Graham et al.

    This study seems a bit circular. We've seen elsewhere how hard it is to diagnose traumatic brain injury, with cases often only being diagnosed after death. People are often given mental illness diagnoses. Even brain scans don't seem to reliably identify the pathology. In this case, I don't...
  2. Hutan

    Trial Report Exploring the role of galectin-9 and artemin as biomarkers in long COVID with [CFS]: links to inflammation and cognitive function, 2024, Elahi et al

    This is from a Canadian team, specifically from Edmonton. I've sent them an invitation to join us here, and a query about the y axis scale in Figure 1F.
  3. Hutan

    UK Guardian: ME left me bed bound for nearly five years. A potted plant helped me rebuild my life

    I agree with both of you. She has said that she recovered a bit, and that gardening then helped her quality of life. A problem is the slipperiness of the word 'recovered' - 'improved' versus 'cured'.
  4. Hutan

    Trial Report Exploring the role of galectin-9 and artemin as biomarkers in long COVID with [CFS]: links to inflammation and cognitive function, 2024, Elahi et al

    It's interesting that serum amyloid A was found to be associated with worse fatigue and joint pain in a small study of Gulf War Illness. And it has been mentioned in relation to the microclots, I think the proponents of the microclot theory have found increased SAA in Long Covid.
  5. Hutan

    Trial Report Exploring the role of galectin-9 and artemin as biomarkers in long COVID with [CFS]: links to inflammation and cognitive function, 2024, Elahi et al

    So, top row Discovery cohort; bottom row validating cohort. SAA is serum amyloid A, charts on the left. IP-10 charts on the right. R2 aren't amazing, but the relationships look quite convincing. But, look at the scales. What is going on there? In chart D, the LC discovery cohort has levels...
  6. Hutan

    Trial Report Exploring the role of galectin-9 and artemin as biomarkers in long COVID with [CFS]: links to inflammation and cognitive function, 2024, Elahi et al

    GAL-9 levels A so, first they identified a value of Gal-9 that separated the LC-ME/CFS Discovery cohort from the healthy controls (1725 pg/ml). The 97% sensitivity means that nearly every individual with their LC-ME/CFS label was identified by this cutoff. The 100% specificity means that...
  7. Hutan

    Trial Report Exploring the role of galectin-9 and artemin as biomarkers in long COVID with [CFS]: links to inflammation and cognitive function, 2024, Elahi et al

    I think there are questions about the definitions used to identify the LC patients with ME/CFS. For example, reference #40 reported the following and its abstract did not mention PEM They report Discovery cohort was 44 LC patients and 24 Recovered Validating cohort was 34 LC patients and 34...
  8. Hutan

    Well-known, famous people with ME/CFS (public thread)

    Posts about Stuart Murdoch's book have been moved to Stuart Murdoch (of Belle and Sebastian)
  9. Hutan

    Patient registries

    I'm not sure what ANZMES have in mind for a patient registry, but they really do need to be collaborating with Paula Lorgelly. I have been talking with her this year about strengthening the coverage of ME/CFS in the Long Covid registry, so that the registry could work for both Long Covid and...
  10. Hutan

    Patient registries

    Yes. The Science for ME forum committee agreed to provide a letter of support. This is an example of the sort of thing the forum can potentially do to assist researchers whose aims align with the forum. We didn't post it on the forum at the time, as it was included in an application for...
  11. Hutan

    A sharp interrogation of why we retreat from other people's illnesses, 2024, New Scientist

    I can see it's about a book: Being Ill On Sickness, Care and Abandonment Neil Vickers, Derek Bolton It sounds interesting. Here's one review: I expect it helps to explain the stubborn attractiveness of the psychobehavioural hypothesis and 'functional disease' labels to so many people...
  12. Hutan

    Multi-ancestry GWAS of [LC] identifies immune-related loci and etiological links to [CFS], fibromyalgia and depression, 2024, Chaudhary et al

    Here's a GWAS for MS that found a genome-wide association with an odds ratio of 1.25. The gene that association was in is the target of an MS drug, so presumably there was a real biological association. What exactly does the odds ratio mean in this context? A person with MS in the sampled...
  13. Hutan

    Multi-ancestry GWAS of [LC] identifies immune-related loci and etiological links to [CFS], fibromyalgia and depression, 2024, Chaudhary et al

    Those odds ratios don't look very flash. e.g. the top GWAS hit had an odds ratio of 1.06. I'm very ready to believe that there is a lot of noise in the grouping of people into 'Long covid' and 'not Long Covid', but, even so, given the likely large number of 'significant loci', is an odds ratio...
  14. Hutan

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yes, I too wish advocates would stop using the 'complex multi-system disease' phrase. It doesn't mean anything helpful. As we have discussed elsewhere, the word 'complex' often implies a psychobehavioural component. Although we don't know what causes ME/CFS, that doesn't mean that the cause is...
  15. Hutan

    Maeve Boothby O'Neill - articles about her life, death and inquest

    We've added these links to the first post of the thread: Discussion of the coroner's Prevention of Future Deaths report: starts here Direct link to the coroner's Prevention of Future Deaths report
  16. Hutan

    New Zealand: ANZMES

    But members don't have to vote on major issues. If you want members to just vote at the AGM for the trustees and maybe if there is a significant change to the constitution, you just put that in the constitution. ANZMES appears to be saying that "member involvement is required for major...
  17. Hutan

    It never gets easier: the lack of a 'training effect'

    I've mentioned elsewhere how I tried to exercise my way back to health with twice weekly intensive pilates sessions. I just got worse. The studio would send out email newsletters each month, with a story about their client of the month, how they had transformed themselves with, of course, the...
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