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  1. Hutan

    Opinion Cognitive behavioural therapy for neurologists, 2023, Stanton, Chalder and Carvalho

    I'm disappointed. With the title of 'Cognitive behavioural therapy for neurologists', I thought it might be the neurologists who were the recipients of therapy aiming to change their behaviour. Certainly, the neurologist I saw would have benefitted from such a therapy.
  2. Hutan

    nature medicine - Postacute sequelae of COVID-19 at 2 years, 2023, Bowe, Xie, Al-Aly

    Even I, without any sort of BPS filter on things, think that statement "most never fully recover from the condition" is unevidenced. The link is to the paper that is the subject of this thread - they followed veterans for two years only. Two years of no recovery is not 'never fully recover"...
  3. Hutan

    Opinion Long COVID: a new word for naming fibromyalgia?, 2023, Xavier Mariette

    Would an example of naming things wrongly be when people are assumed to not have had Covid-19 when they can't provide evidence of having had a positive test? Or perhaps setting the bar for the definition of Long Covid so low that nearly everyone qualifies as having it? Or perhaps labelling...
  4. Hutan

    News from Cochrane

    Do we know who the consumer reps on the Cochrane Editorial Board are?
  5. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thank you to the Italian organisation Associazione CFS Organizzazione di Volontariato for adding their support to the campaign, and also to Giada for reaching out to them. Terrific to see a surge in support from France over the past day.
  6. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Some news about changes in Cochrane's management structures has been moved from this thread to News from Cochrane
  7. Hutan

    Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in [ME/CFS], 2023, Uhde, Vernon et al.

    For sure DMissa, but when you have 9 cases and 7 controls and substantial variation between and within those samples, statistical methods can't do magic.
  8. Hutan

    United Kingdom: ME Association news

    More good work by the MEA trying to clean up UK information about ME/CFS: UK Royal College of Psychiatrists
  9. Hutan

    UK Royal College of Psychiatrists

    Great stuff from the MEA.
  10. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Wow, a great (well, terrible, but useful) bit of information. Thanks Peter. I'd be surprised if the number of citations is a major reason for Cochrane to retain it. Rather I think it's the fervent belief of people with influence inside Cochrane that the Exercise Review is correct that is a...
  11. Hutan

    Immunological profiling in long COVID: overall low grade inflammation and T-lymphocyte senescence and increased monocyte activation..., Hellemonds+

    (B) Fatigue was defined as a total score of ≥22 on the Fatigue Assessment Scale (FAS) questionnaire. Single gene expression levels in fatigued (n=35) and non-fatigued (n=34) long COVID patients, data are presented as mean values and are expressed relatively to the expression level of healthy...
  12. Hutan

    Any examples of flawed Dutch studies similar to the Pace Trial?

    Effectiveness of psychosomatic therapy for patients with persistent somatic symptoms: Results from the CORPUS... 2023 Wortman et al This recent one is flawed in many ways. Ethical issues include issues with free prior informed consent, considerable bias in the data that are reported and...
  13. Hutan

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

    Next talk: Chronic Infections—November 30, 2023, 11:00AM ET
  14. Hutan

    Protocol Psychological risk factors for Long COVID and their modification: study protocol of a three-arm, randomised controlled trial (SOMA.COV) 2023 Engelmann

    I wonder at what stage this study is at. Long covid and ME/CFS patient organisations need to get the message out that this study should be boycotted. When the investigators approach the whole issue with such certainty (e.g. the lead author comes from the Department of Psychosomatic Medicine...
  15. Hutan

    A proposal for further developing fatigue-related post COVID-19 health states for burden of disease studies 2023 Wyper et al

    This seems like an important issue to give attention to - how to calculate estimates of years lost to disability. You can't manage well what you don't measure. And, if you measure it wrong, the management will probably be wrong too. I hope patient charities will read this paper and consider...
  16. Hutan

    Regulatory T cells shield muscle mitochondria from interferon-γ–mediated damage to promote the beneficial effects of exercise, 2023, Mathis et al

    I assumed that a cell had to have the Foxp3 and the CD4 to be a Treg. If it had Foxp4, would it be some other sort of cell? Have we had studies looking at the variation in cell markers in Tregs in ME/CFS?
  17. Hutan

    Body reprogramming for fibromyalgia and central sensitivity syndrome: A preliminary evaluation, 2023, Lanario et al

    It looks like any sort of therapy can be shown to produce a similar sort of benefit. Even 'mindfulness-based mediation' :laugh:. Is that where the participant and their body have a good chat with each other in order to resolve differences? ;) Sorry for copying so many paragraphs, but I find...
  18. Hutan

    Body reprogramming for fibromyalgia and central sensitivity syndrome: A preliminary evaluation, 2023, Lanario et al

    I just want to emphasise the point about this being assessed as not actually being a study requiring consent from patients. The authors claim they are trying something novel and unevidenced. They can't have things both ways. If it is novel, then participants should be asked to give consent...
  19. Hutan

    Body reprogramming for fibromyalgia and central sensitivity syndrome: A preliminary evaluation, 2023, Lanario et al

    Dropouts Of the 189 patients who were enrolled in the course (having accepted the CSS diagnosis), 135 filled out the end of course questionnaires and 81 (43%) of them filled out the questionnaires 3 months after the course. That's surely an enormous winnowing out of the non-believers and...
  20. Hutan

    Body reprogramming for fibromyalgia and central sensitivity syndrome: A preliminary evaluation, 2023, Lanario et al

    Just noting the ongoing disappearance of ME/CFS. Now it seems that you can have fibromyalgia with PEM, presumably meaning that the NICE Guideline for ME/CFS can be ignored. Just making up a conceptual model isn't the answer to this problem though. Time to move on from CBT it seems and offer...
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