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  1. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    And for any system where power (=> rate of energy transfer) is regulated, then signal paths are involved. So if energy flow is being limited below what is expected, then it is not inconceivable it is being regulated too low - due to some signalling fault within the regulation mechanism...
  2. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Yes, I would be very surprised if an illness like ME/CFS did not lead to secondary issues that might easily be confused.
  3. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Maybe. But if a given undertaking (by a person or any other energy consumer) requires energy to be supplied at a given rate, then that is down to physics. If the energy being demanded is not met then the undertaking cannot be fulfilled at the required rate.
  4. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Exactly. It would be interesting to know if the physiological responses to energy demand for pwME is unique, or if similar to some other illnesses. And although PEM is a significant symptom, it is not the only one. @Jonathan Edwards?
  5. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    This is the post I was thinking of. Not a trial, but @Jonathan Edwards' thoughts regarding possible investigations: https://www.s4me.info/threads/objective-assessment-of-diverse-types-of-ms-related-fatigue-and-fatiguability-lurija-institute.4241/#post-86922
  6. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    I'll have a forage tomorrow ... if I remember! I think it related to some trial or other - non ME.
  7. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    There are also valid ways to measure (or at least assess) cognitive capabilities as I understand it. I know @Graham has been working on such a device, but I think reaction times are likely an indicator (relative ones anyway, between good times and bad), and I believe other methods have been...
  8. Barry

    Cochrane Survey: Provide feedback on Cochrane’s Policy on Conflicts of Interest

    Thank you. Yes, that is an in important distinction. I recall hearing a similar manipulation of meaning relating to interest a good few years ago by a Sun reporter (no surprises there). When quizzed whether he thought his actions were truly in the public interest, he responded by saying that...
  9. Barry

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    No, but it is entirely right to blame her for being untrustworthy on the issue in the first place. The journal's error does not itself warrant withdrawal, but Crawley's does. Which is maybe why the journal focused on its own failing.
  10. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Yes, my wife can walk 2-3 miles on a good day, but is influenced significantly by whether the walk is continuous, or with frequent stops to take photographs. In the latter case it's as if the short but frequent stops allows for brief mini-recoveries, and as if she somehow benefits from the...
  11. Barry

    Cochrane Survey: Provide feedback on Cochrane’s Policy on Conflicts of Interest

    NICE are also clear on this. https://www.nice.org.uk/Media/Default/About/Who-we-are/Policies-and-procedures/declaration-of-interests-policy.pdf [my bold] So to my mind Cochrane are just a*** licking the BPS crowd.
  12. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Yes I fully agree with that, and I think it is that sort of "explanation" that leads to disbelief and disrespect from healthy people, or even unhealthy people who don't have ME/CFS. I get muscle fatigue following exercise and it can last for some time, but it is the healthy sort. For my wife it...
  13. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    I also think that although PEM is a very valid indicative symptom of ME/CFS, it may be simply a subset of the broader symptom - the body's abnormal response to exercise. I think it is going to be true of all people with ME/CFS that their bodies respond abnormally to exercise, even if some maybe...
  14. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    In which case why do we only talk about harms? Surely if a treatment incurs significant worsening of symptoms, that can still have significant negative impact on a person. Doesn't the focus on harms simply prove a get-out-of-jail card for those cases where significant worsening has occurred?
  15. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    I know what I'm about to say here has an amusing edge to it, but there is also a serious aspect to it regarding exercise and energy envelope. A while ago I posted about our young dog being a "power assistance" dog. But though spoken mostly in jest, that is proving very to be very true, and to...
  16. Barry

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    All I'm really saying is that when looking for differences between supine and upright images, it is crucial to null out any differences due to the two images not being the exact same slice through the head. My suggestion is a way to achieve that; if it's not already being done by people looking...
  17. Barry

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    After writing the above I realised that I was probably overlooking the capabilities of modern 3D post-processing software, so I spoke to colleague at work who is into 3D modelling and tomography. Basically it does not matter how a sample (a human head in this case) is 'sliced' by an MRI, because...
  18. Barry

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Can you elaborate on that please, because we should understand.
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