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  1. Hutan

    Reports from participants in GET and CBT trials

    Cognitive Behavioral Therapy Improves Physical Function & Fatigue in Mild & Moderate CFS: A Consecutive RCT, 2021, Gotaas et al A report from a patient who participated in a Norwegian CBT trial.
  2. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    Here's a direct link to the radio piece. It's good - the angle is that people are thinking that Long Covid is essentially the same as ME/CFS, and Warren's lab is working to see if they can find the same epigenetic markers and proteins in a handful of Long Covid people as they found in some...
  3. Hutan

    Open Medicine Foundation (OMF)

    I don't think we can say that anything at all has yet been shown about the nanoneedle, that's the problem, when put against the claims. I think you are right to point out that Davis's team has not, as far as I can remember, claimed it has differentiated people with ME from people with other...
  4. Hutan

    Open Medicine Foundation (OMF)

    A tool to make a quick and easy diagnosis would be an amazing thing, making it clear that there is a biological basis to the illness and helping to speed people who don't have ME/CFS on their way to their correct diagnosis. It would help research, by ensuring ME/CFS cohorts are 'pure', as well...
  5. Hutan

    Open Medicine Foundation (OMF)

    OMF has funds to distribute to research, I thought. Does OMF also not think that funding the nano needle work is a priority?
  6. Hutan

    Predicting post-exertional malaise in Gulf War Illness based on acute exercise responses (Boruch et al., 2021)

    Yes, it's strange. You would think, if you were aware of the term 'post-exertional malaise' and the use of 2-day CPET results to study it in ME/CFS, that that is what you would be wanting to replicate in GWI. Perhaps the aim was to get a conclusion that sounds a lot like 'PEM is not related to...
  7. Hutan

    Exploratory open label, randomised study of acetyl- and propionylcarnitine in CFS, 2004, Vermeulen and Scholte

    Abstract Objectives: We compared the effects of acetylcarnitine, propionylcarnitine and both compounds on the symptoms of chronic fatigue syndrome (CFS). Methods: In an open, randomized fashion we compared 2 g/d acetyl-L-carnitine, 2 g/d propionyl-L-carnitine, and its combination in 3 groups of...
  8. Hutan

    Effect of Galantamine Hydrobromide in Chronic Fatigue Syndrome A Randomized Controlled Trial, 2004, Blacker et al.

    Posts about another paper have been moved to a new thread: Exploratory open label, randomised study of acetyl- and propionylcarnitine in CFS, 2004, Vermeulen and Scholte
  9. Hutan

    The need for a standardized conceptual term to describe invalidation of patient symptoms, 2021, Bontempo

    I was actually needing such a term last night, as I wrote to a specialist about a condition not obviously connected to ME/CFS. I considered using 'gas-lighting', but it seemed too informal and too likely to strengthen any impression of 'hysterical activist patient'. There is going to be a lot...
  10. Hutan

    Exploratory open label, randomised study of acetyl- and propionylcarnitine in CFS, 2004, Vermeulen and Scholte

    Wouldn't that outcome be consistent with a treatment that had to be taken every day to maintain a positive effect though?
  11. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A post about a Guardian article on why Long Covid is more prevalent in women has been moved to the Long Covid epidemiology thread: Long Covid epidemiology (prevalence, incidence, recovery rates)
  12. Hutan

    Effect of Galantamine Hydrobromide in Chronic Fatigue Syndrome A Randomized Controlled Trial, 2004, Blacker et al.

    This was interesting re placebo response rates: I expect placebo response rates depend on how strongly the treatment is 'sold'. This study may be useful when explaining the issues with subjective outcomes in unblinded trials with inadequate controls.
  13. Hutan

    Effect of Galantamine Hydrobromide in Chronic Fatigue Syndrome A Randomized Controlled Trial, 2004, Blacker et al.

    Thanks for posting the trial @Michiel Tack. Certainly a lot of effort was put into it, and it seems to have been well done. Some of the baseline data is interesting and potentially useful, given that it comes from a large and geographically diverse sample. See for example this finding for...
  14. Hutan

    Healthcare Hubris - blogs on the biopsychosocial model by Joanne Hunt

    I've just finished the 2nd blog. I'm no expert in UK BPS history, but I think the blogs are very well done. A number of the points we seem to have to make over and over again when evaluating BPS papers are well made in the blogs. e.g. (edited to remove note now covered by mod note upthread)
  15. Hutan

    Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome - Komaroff, Lipkin 2021

    I agree. But, at the same time, a lot of people don't look very deeply at the evidence behind the statements. I think papers like this one probably do convince quite a lot of people that there is a huge stack of robust research on a wide range of biological anomalies. And those people...
  16. Hutan

    Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome - Komaroff, Lipkin 2021

    I'm not sure that I've registered the term 'redox imbalance' before. The authors have suggested that redox imbalance 'may be a marker for systemic inflammation'. It sounds as though its about overproduction of ROS and reactive nitrogen species. So, the theory goes - infection or other...
  17. Hutan

    Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome - Komaroff, Lipkin 2021

    I don't think either of those statements can be made with such certainty. Reading this paper, I'm left with the feeling that we have got to get some decent replication of studies to confirm (or disprove) the assumptions about ME/CFS that some ME/CFS experts state so confidently and that are the...
  18. Hutan

    Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome - Komaroff, Lipkin 2021

    I don't think it's complete enough to say the physical stressors are exercise and prolonged upright position. Lots of people with ME/CFS don't do any formal exercise. It's physical activity that is the problem. I don't know that we have evidence that emotional stressors produce a worsening of...
  19. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Some posts about people with Long Covid receiving CCI diagnoses have been moved to this Members only thread: Structural spinal problems and ME - blogs and social media
  20. Hutan

    CDC Treatment Evidence Review - consultation period

    I think that article by Ben Hsuborger is helpful in understanding the issues around this review, and I'm glad to see that MEAction is working effectively on providing feedback on the review. Apologies if it has already been mentioned on the thread, but this was information that was new to me...
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