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  1. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Every effective seller knows how to package and market and deliver their product to maximise sales. People choose to do GET - do we blame them for their bad choices, or those who offer the therapy, or those who conduct sloppy trials that make it appear effective, or the people who do sloppy...
  2. Hutan

    NIH Heal (addiction) Initiative to promote alternative therapies for post-surgical pain

    A cold pack isn't a full-on alternative therapy, of course. But, I don't believe those 'multiple research studies'. We've seen too many rubbish ones. If a cold pack really helps post-surgery pain, why wouldn't you tell everyone, rather than just the patients who look at the menu and think...
  3. Hutan

    Herpesviruses serology distinguishes different subgroups of patients from the ME/cfs Biobank. (2021) Dominguez et al

    11 authors. That's a big group. So, just from the abstract, I think people who reported a non-infectious ME/CFS trigger were more likely to be seronegative to EBV and chicken-pox/shingles than other ME/CFS groups. But the association depends on the seropositivity cutoff. And people who...
  4. Hutan

    NIH Heal (addiction) Initiative to promote alternative therapies for post-surgical pain

    That's terrible @shak8. There's that story about Mao promoting traditional treatments* and traditional healers when China was not able to meet its people's demand for good healthcare. I'm not sure how much truth there is to the story, but that is what this sounds like. Health care system...
  5. Hutan

    Hypothesis: Interleukin-6 as potential mediator of long-term neuropsychiatric symptoms of COVID-19, 2021, Kappelmann et al

    Interesting to track who is getting involved in this type of hypothesising, I think. NilsKappelmann a,b; RobertDantzer c; Golam M.Khandaker d,e,f,g a Department of Research in Translational Psychiatry, Max-Planck-Institute of Psychiatry, Munich, Germany b International Max Planck Research...
  6. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I could not agree more. @Hilda Bastian, @Medfeb, @Michiel Tack's analysis of the Cochrane's MetaBLIND study is important reading for everyone involved in the ME/CFS Exercise Therapy review. Cochrane has had an institutional blindspot when it comes to bias due to lack of blinding. Anyone who...
  7. Hutan

    Bias due to a lack of blinding: a discussion

    That's a great find, and a great analysis Michiel. The author of the review is Helene Moustgaard; her response to Michiel's analysis (linked at the bottom of the analysis) is quite odd. In her letter to Michiel, she appears to be saying 'yes, yes, of course we know about all those problems...
  8. 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.
  9. 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...
  10. 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...
  11. 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...
  12. 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?
  13. 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...
  14. 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...
  15. 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
  16. 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...
  17. 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?
  18. 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)
  19. 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.
  20. 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...
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