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  1. Hutan

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    @Tilly, I honestly do have an open mind on this, but I did not find the video convincing at all. There's a discussion about ways to make a diagnosis. The doctor (Dempsey) says that a negative test means nothing, because mast cells release hundreds of chemicals and it might not be the tryptase...
  2. Hutan

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Yes, I want to reiterate those well-expressed points from @Jonathan Edwards and @Robert 1973. I'm not sure how we get many of our high profile advocates to understand the problem of focussing on the diagnostic criteria issue, much less the likes of BACME who still have one foot firmly in the BPS...
  3. Hutan

    Structural brain changes in post-COVID condition and its relationship with cognitive impairment, 2024, Pacheco-Jaime et al.

    Yes, and I wouldn't even go that far for ME/CFS and LC-ME/CFS, based on the evidence to date.
  4. Hutan

    Structural brain changes in post-COVID condition and its relationship with cognitive impairment, 2024, Pacheco-Jaime et al.

    That's quite a list SNT! Here's the discussion of the issue from this paper: CTh is cortical thickening
  5. Hutan

    Structural brain changes in post-COVID condition and its relationship with cognitive impairment, 2024, Pacheco-Jaime et al.

    The disparate findings are acknowledged by the authors: (paragraphs and bolding. added)
  6. Hutan

    Structural brain changes in post-COVID condition and its relationship with cognitive impairment, 2024, Pacheco-Jaime et al.

    Wasn't the last paper about cortical thickness in post-Covid condition worried about a reduction rather than increase? Edit: Yesterday's paper reported a thinning of some parts of the cortex, but that was in CFS Multiple Voxel Pattern Analysis Shows Associations Between Chronic Fatigue Syndrome...
  7. Hutan

    Open TRI-ME: Trimetazidine to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A double-blind, randomised, placebo-controlled efficacy trial

    I think this looks interesting. As I understand it: Get blood cells from people with ME/CFS and healthy controls Make stem cells Grow the stem cells to differentiate into tissue types Compare the transcriptomics of the differentiated cells (ME/CFS vs HC) If they can achieve that, then they...
  8. Hutan

    What research do you want to see? (study ideas)

    Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with [LC], 2025, Pöhler+ Replicating this study
  9. Hutan

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    The levels that are considered elevated for any biomarker are often set somewhere around where 90% or 95% of the population would have a lower level. So, saying 4 to 6% of people having 'elevated' levels might be pretty much circular.
  10. Hutan

    Open TRI-ME: Trimetazidine to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A double-blind, randomised, placebo-controlled efficacy trial

    I don't know how you would test drugs on some cells in order to find a cure for ME/CFS? I mean, it's not like cancer, where you just want to kill the cells, so you can see if things worked. Or like some intracellular infection, where you can see if you eliminated the pathogen. I don't think...
  11. Hutan

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    I do find this wide acceptance of MCAS being a common co-morbidity of ME/CFS a puzzle. I think it's worth investigating to get to a clearer understanding of what is true or not, because the current vague situation is undoubtedly contributing to people with ME/CFS being seen by many doctors as...
  12. Hutan

    United Kingdom - Suffolk and North East Essex ME/CFS services

    Very sorry to hear that the process seems to have been subverted @Suffolkres.
  13. Hutan

    Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with [LC], 2025, Pöhler+

    @SNT Gatchaman, this is your field I think, what do you think about attempting to replicate this, maybe in conjunction with the Tairāwhiti MRI team or Starship? Do you think it is possible that the findings are just the result of some sort of confounding with the increased heart rate and...
  14. Hutan

    Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with [LC], 2025, Pöhler+

    From the editorial: Related to comments made elsewhere about big drug companies perhaps getting drawn into being Long Covid allies by their interest in selling vaccines: 3 Jul 2024 — GSK acquires full rights to develop, manufacture and commercialise globally mRNA candidate vaccines for...
  15. Hutan

    Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with [LC], 2025, Pöhler+

    Thanks SNT. Also an editorial on the paper: Seeing the Unseen: Pulmonary MRI in Children with Post–COVID-19 Condition I guess questions are, is this decrease in lung function found in people with PEM, including people with non-Covid-19 ME/CFS? Could this decrease in lung function explain...
  16. Hutan

    Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with [LC], 2025, Pöhler+

    This sounds interesting. Even if the people with this phenotype don't necessarily have ME/CFS, these tests could be important in unravelling Long Covid into subsets that can be studied better. I haven't read the paper yet, but I'm interested in comments from people who have.
  17. Hutan

    Multiple Voxel Pattern Analysis Shows Associations Between Chronic Fatigue Syndrome and Cortical Atrophy, 2025, Wu et al

    Yes, it seems that any sort of neuronal loss can cause cortical thinning - dementia, Parkinsons, aging, brain injury. If the authors think that CFS is a disease only of fatigue and impaired cognition, then the study doesn't tell us much. I don't think we have seen much consistency between...
  18. Hutan

    Trial Report Plasma exchange therapy for the post COVID-19 condition: a phase II, double-blind, placebo-controlled, randomized trial, 2025, España-Cueto+

    On another issue - recovery Of the 139 people accepted for the study, 20 were later deemed not suitable due to 'clinical improvement'. That's a 14% natural recovery rate - worth tucking away for when we look at studies of treatments.
  19. Hutan

    Trial Report Plasma exchange therapy for the post COVID-19 condition: a phase II, double-blind, placebo-controlled, randomized trial, 2025, España-Cueto+

    Arguably, that is exactly what we have seen, people with different mixes of a range of symptoms. But yes, this study seems to suggest that autoantibodies aren't the cause. Or other large molecules in the blood that can't be rapidly replaced. Is there any way the study's findings could be...
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