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  1. Hoopoe

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154208/ It's very relevant to the CBT studies in ME. It compared the effect of medication, placebo, sham acupuncture and no intervention on subjective and objective outcomes in asthma. The results are similar to what we see in CBT for ME studies.
  2. Hoopoe

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    I did some simple calculations once and the economic losses caused by ME/CFS are so vast that even achieving a few percent reduction after 10 years of significant investment in research would very quickly pay itself.
  3. Hoopoe

    Article: Science: Is exercise actually good for the brain?

    It seems intuitive to me that the right amount will be good, and too much will be bad. The right amount will vary between individuals. Yet the current approach is typically to define an exercise amount target that is the same for everyone. And there seems to be little interest in determining...
  4. Hoopoe

    Speculations about the genetics of ME/CFS and DecodeME

    Male/female differences in the illness might also map to different susceptibility loci on the X and Y chromosomes.
  5. Hoopoe

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    I don't understand cell biology well but a problem with the sodium-potassium pump has been proposed by Scheibenbogen and it sounds like the kind of thing that can maybe explain the salt stress test results. Paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9733289/ I have no idea how a...
  6. Hoopoe

    Speculations about the genetics of ME/CFS and DecodeME

    Possible but maybe the FOXP4 association is more with the subtypes of Long Covid that are quite distinct from ME/CFS, like hospitalized patients with severe acute illness that go on to have some degree of organ damage (in particular the lungs, which was highlighted in that paper on FOXP4).
  7. Hoopoe

    Speculations about the genetics of ME/CFS and DecodeME

    Some more thoughts on why I think it could be genes related to recovery from exercise and stressors in general: The fact that ME/CFS is so poorly understood could be a sign that its origin is in human physiology that is difficult to measure or maybe hasn't been studied much. These recovery...
  8. Hoopoe

    Speculations about the genetics of ME/CFS and DecodeME

    I felt like writing about this. In my opinion ME/CFS is probably a label for several different poorly understood illnesses that happen to share some characteristics and which do not yet have their own name. We might call them subtypes of ME/CFS. Then, in a ME/CFS cohort there is probably also a...
  9. Hoopoe

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    If I look at that study of asthma patients treated intentionally with a placebo and real medication, and then at CBT for ME, I can not see much of a difference. In the asthma study they recorded substantial improvements in breathing even in patients treated with placebos. The objectively...
  10. Hoopoe

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Brian Hughes would also be a good speaker, with the right credentials.
  11. Hoopoe

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    @InitialConditions I think it's important to mention that the alleged positive effects may be an illusion of a biased clinical trial design. And how the systematic application of this kind of design has created misunderstanding of ME as a psychogenic illness, something reversible by a change in...
  12. Hoopoe

    Exertion intolerance in ME vs McArdle disease?

    McArdle's disease has a characteristic "second wind phenomenon" where progressive fatigue and muscle weakness appears during the first 15 minutes of exercise but then disappear. The person can then continue exercising. This is because the glycolytic energy production is impaired. In ME/CFS the...
  13. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    Knowing the specific pathways that contribute to causing ME/CFS could be very valuable.
  14. Hoopoe

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    Thanks. While the effect is larger than that reported by Wessely, this doesn't save the study because this is an unreliable and unorthodox method for attempting control for placebo effects. I'm not getting the impression that care as usual is generally a positive and helpful experience for long...
  15. Hoopoe

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    The reply seems to fall under the "admit the limitations of the study so you can't be accused of ignoring them but then act like they don't matter" category. Can anyone check if the results exceed the modest improvements that could be reasonably assumed to be merely a placebo effect? (yes I...
  16. Hoopoe

    Genome-wide Association Study of Long COVID, 2023, Lammi et al.

    Interestingly FOXP4 is mentioned in one study on the genetic overlap between Ehlers-Danlos syndrome and long covid: https://www.medrxiv.org/content/10.1101/2023.03.24.23287706v1.full (the EDS in that study appears to be a clinical diagnosis with dysautonomia plus hypermobility, not the well...
  17. Hoopoe

    Genome-wide Association Study of Long COVID, 2023, Lammi et al.

    If you're curious what FOXP4 does: it's a transcription factor. That means it controls the expression of other genes. Little seems to be known about the exact genes regulated by FOXP4. It is known to play a role in the nervous system, and to also be expressed in the gut and lungs. I get the...
  18. Hoopoe

    Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

    I think it's also a question of funding and putting in the work of replicating and refining the candidate biomarkers. If that had been done we might have a decent biomarker by now. It's the same with treatments probably. The orthostatic issues are low hanging fruit and that we don't have good...
  19. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    Do you remember any details? I heard Ron Davis was given a NIH grant for studying the HLA genes and found some risk SNPs for ME/CFS. It should be published soon.
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