Search results

  1. Hoopoe

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Or maybe the psychotherapy for CFS is horribly misguided and often harmful.
  2. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    I was thinking about this today. Unblinded clinical trials with self-reported outcomes would probably not be accepted as evidence by Cochrane if the treatment in question was a fringe treatment like homeopathy, reiki, etc. It would probably be considered embarassing to even take any of such...
  3. Hoopoe

    Unemployment and work disability in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: study from Spain (2019) Castro-Marrero et al

    This sounds interesting. This seems to suggest that the treatment that can reverse these symptoms might have the biggest impact on ability to work.
  4. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    The people involved in this at Cochrane seem to have difficulty understanding that modest self-reported positive effects is exactly what you would expect if the treatment did not work but was tested without adequately controlling for bias while introducing positive expectations. They might even...
  5. Hoopoe

    Monitoring treatment harm in [ME/CFS]: A freedom-of-information study of National Health Service specialist, 2019, McPhee et al

    The CBT/GET narrative is apparently designed to anticipate and deflect reports of harm. Presumably its designers created it with the firm conviction that in ME/CFS there is nothing wrong in the body, and that therefore exercise cannot harm. They offer all sorts of explanations and...
  6. Hoopoe

    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    That was unlikely to be 15000 patients but included friends and family members. It's also much easier to sign a petition than to give a saliva or blood sample.
  7. Hoopoe

    MUS services in UK and other MUS related issues

    Maybe we need a trial of aggressive rest therapy? :D With just minimum activity to prevent the worst deconditioning.
  8. Hoopoe

    K Pressin: new treatment for ME CFS(?) - video Dr Derek Enlander (25 June 2019)

    Right. The American patients are often on half a dozen medications.
  9. Hoopoe

    MUS services in UK and other MUS related issues

    The vicious circle of psychosomatic medicine: An illness is poorly understood -> psychosomatic medicine zealots seize the opportunity, declare it a psychogenic illness and make up some stigmatizing narrative to discredit sufferers and control them -> entrenched business interests and public...
  10. Hoopoe

    MUS services in UK and other MUS related issues

    It seems that back in the day, ideas weren't tested to see if they are correct, they were simply asserted to be correct. Sharpe and colleagues continue this tradition.
  11. Hoopoe

    Behavioural medicine

    In psychology, the patient is the agent of change could be interpreted in a different way too. One that has to do with protesting abysmal quality.
  12. Hoopoe

    Children with Orthostatic Intolerance Exhibit Elevated Markers of Inflammation in the Dorsal Medulla (2019) Shaltout et al

    https://www.physiology.org/doi/abs/10.1152/ajpheart.00680.2018?journalCode=ajpheart This isn't ME/CFS research but it's not unrelated either, so I thought this should be in the ME/CFS research section.
  13. Hoopoe

    Europe: EUROMENE

    That is not the best choice of words but the rest of the leaflet is good.
  14. Hoopoe

    Mental fatigue is linked with attentional bias for sad stimuli, 2019, Watanabe et al

    This might be similar to people being more irritable and cranky when they are really exhausted. Which I think happens because in an exhausted state there is an inability to resist stress, so people tend to react to minor things. That seems similar to the "inability to filter out" idea by @inox.
  15. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Once the hope turns out to be false hope, and the patient understands that providing false hope to patients like them is the only real plan pursued by the healthcare system, hopelessness and despair sets in.
  16. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Maybe they think like this: Medically unexplained symptoms are a somatoform disorder but we don't say that openly. Hope, motivation and positive expectations treat the sick mind. A bogus treatment is an acceptable way to deliver hope, motivation and positive expectations (placebo effect). It...
  17. Hoopoe

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    He is right in that patients with invisible illnesses are treated as second or third class citizens. The irony is that he himself is such a big part of the problem: if you insist that unblinded studies are good enough evidence and switch outcomes, then you're effectively saying that ME/CFS...
  18. Hoopoe

    Can POTS come and go? Variability of POTS degree with PEM

    It is variable. It seems to depend on exertion, temperature, hydration, salt intake. In my experience eating food I'm intolerant to also triggers increased heart rate.
  19. Hoopoe

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    If they genuinely believed that a placebo is good for patients, they should not be giving CBT and GET but some fake biomedical treatment because that will produce stronger placebo responses. As usual their position is incoherent. Their real goals are keeping CFS in the mental health domain as...
Back
Top Bottom