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  1. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    Very sad. It's terrible seeing young people having their lives so limited. It looks as though ANZMEs were involved in this article; good on them. The only awkward notes in the article are Professor Tate's quotes (above) that leave the door unnecessarily wide open for the interpretation of...
  2. Hutan

    Efficacy and tolerability of an endogenous metabolic modulator (AXA1125) in fatigue-predominant long COVID: a single-centre, double-blind, randomised

    Yes, it's not surprising that reported fatigue improved in both the treatment and placebo - partly that's what the ambiguity of the CFQ is there for, and partly all the participants would have had an expectation of an effect. There was an improvement on average of 5.2 points on the CFQ scale...
  3. Hutan

    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    Thread on the published paper: Efficacy and tolerability of an endogenous metabolic modulator (AXA1125) in fatigue-predominant long COVID: a single-centre, double-blind, randomised
  4. Hutan

    Hypothesis: inflammatory acid-base disruption underpins Long Covid 2023, van der Togt & Rossman

    We have a discussion thread on this topic - here: Metabolic acidosis - high anion gap
  5. Hutan

    Hypothesis: inflammatory acid-base disruption underpins Long Covid 2023, van der Togt & Rossman

    My lactate levels were normal, and the response to exercise in terms of lactate was normal. I didn't find anything unusual at all. I have had an anion gap test twice. Both times it was highish. It's one of the issues with my lab testing that I have marked as being odd. It was a reason why I...
  6. Hutan

    Hypothesis: inflammatory acid-base disruption underpins Long Covid 2023, van der Togt & Rossman

    Good on them for proposing ways of testing their hypothesis. There is some reporting of preliminary and sometimes questionable research findings in support of their hypothesis, but I can't recall the last paper I saw that didn't do that. For what it is worth, I bought a home lactate meter and...
  7. Hutan

    Combination of whole body cryotherapy with static stretching ... reduces fatigue and improves functioning of the [ANS] in CFS, 2022, Kujawski et al

    Here are notes on other things: A power point slide on the premise for testing cryotherapy included a reference to Kulis et al 2017 which found that cryotherapy induced a decrease in the elasticity of erythrocytes. But, I thought, if anything we had a problem with the rigidity of our red blood...
  8. Hutan

    Combination of whole body cryotherapy with static stretching ... reduces fatigue and improves functioning of the [ANS] in CFS, 2022, Kujawski et al

    I made it to the webinar, I woke up nearly in time although missed the first five minutes. Most of the webinar was filled up with a presentation by the researcher. The host, Rochelle Joslyn, asked some questions, but little information came out in response. Other than Rochelle, I was the only...
  9. Hutan

    International: IACFS/ME - International Association for CFS/ME, IACFSME

    A reminder that this is coming up later today/tomorrow, depending on your time zone 1 pm New York time 14 April More info here: Combination of whole body cryotherapy with static stretching ... reduces fatigue and improves functioning of the [ANS] in CFS, 2022, Kujawski et al You need to...
  10. Hutan

    Distinguishing features of Long COVID identified through immune profiling, 2022, Klein, Iwasaki et al

    More on that exogenous corticosteroid possibility: Is there a safe and effective way to wean patients off long-term glucocorticoids?, 2020 I haven't looked closely to see if that is likely to be true, but it does sound concerning.
  11. Hutan

    Synbiotic Supplementation Improves Quality of Life and Inmunoneuroendocrine Response in Patients with FM: 2023 Hinchado et al

    So, a large proportion of people with FM have CFS. And higher levels of cortisol are characteristic of FM (and, by extension, CFS). But wait - higher cortisol? Wasn't it supposed to be lower cortisol? Or lower cortisol before breakfast? Or something? People are so sure these conditions...
  12. Hutan

    The Philippines' 'critical brain drain' as nurses leave their home country for jobs abroad

    It's an issue I've been giving quite a bit of thought to, but this is the first time I have seen it in the media. Here in my country, the plan to staff our health system seems to involve a very large percentage of immigrants. That's quite a big imposition on the countries that produce those...
  13. Hutan

    Distinguishing features of Long COVID identified through immune profiling, 2022, Klein, Iwasaki et al

    Another thought on the cortisol finding: This recent paper reported on prescriptions given to people from two very large databases, reporting the odds ratios for people having had a Covid infection in the previous two years or so. Data-driven analysis to understand long COVID using electronic...
  14. Hutan

    Genomic Diagnosis of Rare Pediatric Disease in the United Kingdom and Ireland, 2023, Wright et al.

    I thought new diseases weren't supposed to be given a name that includes the names of people? Edit - oh, that was a bit negative, I should have also said 'Good news; I'm sure a lot of families will benefit'.
  15. Hutan

    Functional Neurological Disorders - A Common but Often Unrecognized Diagnosis 2023 Barth and Gegusch

    Oh, don't get me started on the 'singing in the shower' treatment. According to some, you are setting quite a high bar in terms of treatment efficacy. As @rvalle noted: Ha (sorry, edited after posting)
  16. Hutan

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Functional Neurological Disorder - an article from the NIH A really poor webpage on FNDs from the NIH.
  17. Hutan

    Functional Neurological Disorder - an article from the NIH

    There's no good evidence for most of that. That page is really bad nonsense. The page was last reviewed on Jan 2023. It is possible to leave feedback about the page - there's a feedback box on the left.
  18. Hutan

    A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID, 2023, Petracek, Rowe et al

    On low dose naltrexone: Reference 40 - the 218 patients study: We have a thread on it that is worth a read:Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2019, Polo et al. It was an open label retrospective study; the clinic with the...
  19. Hutan

    A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID, 2023, Petracek, Rowe et al

    Just further on the mast cell diagnosis. To a man with a hammer, the world looks like a nail. Perhaps this clinic did consider a range of alternative causes for the histamine and chromogranin A levels, but this case study does not report that. There are a number of other diagnoses that would...
  20. Hutan

    A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID, 2023, Petracek, Rowe et al

    The man's plasma histamine at 3.5 ng/mL was high (normal range <1.8 ng/mL). Histamine at that level sounds as though it could cause all sorts of symptoms. That is interesting. I wonder how common that is in ME/CFS and how many people benefit from various anti-histamines. And very mildly high...
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