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  1. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    I think the relevance is mainly in the fact that CSF cortisol was measured in the NIH study and not found to be abnormal. That makes the result of abnormal CSF cortisol here less likely to be true, and contributes to the likelihood that something has gone wrong with the sampling that affected...
  2. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Thanks @forestglip. Of course the Walitt Deep Phenotyping Study had a very small sample size too, but I think the fact that they didn't find any significant difference in cortisol levels throws some doubt on the findings of stark differences in this autopsy study.
  3. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Normal values of cortisol seem to be reported to be about 3 to 55 nmol/L in cerebrospinal fluid, but I found surprisingly little depth to the data. Here's the cortisol chart from this latest paper again: So, that doesn't help us a lot. There are two outliers in the healthy cohort, with...
  4. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    The NIH Walitt et al Deep phenotyping study looked at all sorts of things in the cerebrospinal fluid. I'd be very surprised if cortisol wasn't looked at. It wasn't mentioned as being different, whereas various much more obscure molecules were. Does someone have the CSF data from that study handy?
  5. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    Yes, I think that is true when it comes to the slides of CRH cells. But, if people have been in pain and severe emotional distress for a long time, then it seems possible to me that some of the drugs (e.g. anti-psychotics, benzodiazepines) they have been taking could potentially have an impact...
  6. Hutan

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    I'm late to this thread, but I want to echo Kitty's concern about that poor article by Cort. I'm concerned that many people who haven't been around long enough to see findings come and go might have made or might be making life-changing decisions based on an interpretation of an interpretation...
  7. Hutan

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be. We've discussed it elsewhere on the forum. The service promotes unproven therapies including Graded Activity Therapy (it's just not called that)...
  8. Hutan

    Protocol Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT (MILES RCT)

    Clinical trials says So, it sounds as though recruitment is complete.
  9. Hutan

    Genetic variants associated with chronic fatigue syndrome predict population-level fatigue severity and actigraphic measurements, 2024, Liu et al.

    I found the following: It motivated me to find out if the authors controlled for sex in the temperature studies. It looks as though they matched the CFS group with the controls on age and sex before they did the analysis of activity levels and temperature. That's good. What I realise now...
  10. Hutan

    Genetic variants associated with chronic fatigue syndrome predict population-level fatigue severity and actigraphic measurements, 2024, Liu et al.

    They say there were lower wrist temperature amplitudes in the CFS group. That's interesting. But, wouldn't wrist temperature be highly susceptible to environmental conditions? As in the healthy controls going off to their squash games and spin classes and even their morning hot shower might...
  11. Hutan

    Genetic variants associated with chronic fatigue syndrome predict population-level fatigue severity and actigraphic measurements, 2024, Liu et al.

    I assume the evidence is that one SNV that they found was associated with subjective fatigue severity in the control group? I haven't read the study, but I note that they didn't say anything about the SNV in their own CFS sample, only that it had been associated with CFS in the literature...
  12. Hutan

    Genetics: Chromosome 20: ARFGEF2, CSE1L, STAU1

    We are waiting until 'the answer' pops out of that discussion. :) When it does, you can be sure it will be pasted here.
  13. Hutan

    Genetics: Chromosome 20: ARFGEF2, CSE1L, STAU1

    There is some discussion and analysis of the Chromosome 20 region on the Alphagenome thread
  14. Hutan

    News from Scotland

    We have a thread discussing the planned CFS for the Scottish Highlands Scottish ME/CFS Clinical Service Provision Some posts made on this thread have been moved there.
  15. Hutan

    Utility of Glucagon-Like-Peptide-1-Receptor Agonists in Mast Cell Activation Syndrome, 2025, Lawrence B. Afrin M.D, Blitsheyn et al

    Quoting ChronicallyOverIt's post from the GLP-1ra thread about this paper.
  16. Hutan

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    We have a thread for the paper Utility of Glucagon-like peptide 1 receptor agonists in Mast Cell Activation Syndrome, 2025, Afrin, Blitsheyn et al
  17. Hutan

    Utility of Glucagon-Like-Peptide-1-Receptor Agonists in Mast Cell Activation Syndrome, 2025, Lawrence B. Afrin M.D, Blitsheyn et al

    The authors seem to be saying that MCAS can present in all sorts of ways, and that all sorts of drugs may or may not be useful in particular cases. That makes it very hard to prove or disprove MCAS as a clinically useful entity.
  18. Hutan

    Utility of Glucagon-Like-Peptide-1-Receptor Agonists in Mast Cell Activation Syndrome, 2025, Lawrence B. Afrin M.D, Blitsheyn et al

    We have a thread looking at the evidence about and experiences with GLP-1ra drugs on ME/CFS here.
  19. Hutan

    The New Yorker: Did a Celebrated Researcher Obscure a Baby’s Poisoning?

    Reckon we could get a New Yorker article about Cochrane and the Larun et al review? (Mostly just joking)
  20. Hutan

    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    If you can give us an update on where things are at now, that would be great @duncan. I didn't know/remember who Phil Baker is. This is from the American Lyme Disease Foundation, they are clearly fans. Looks like Baker retired 2023. The situation with Lyme in the US is hard to follow.
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