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  1. Barry

    A general thread on the PACE trial!

    Well no, it wouldn't. If secondary condition B is caused by primary condition A, then attempts to directly fix condition B, without first fixing condition A, are doomed to failure. It's akin to replacing a fuse that blew because of an electrical fault. You can replace all the fuses you like but...
  2. Barry

    Corrected proof: Treatment outcome in adults with CFS: a prospective study in England, CFS/ME National Outcomes Database, 2013, 2020, Crawley,White

    Presumably ethical approval is distinct from whether there are methodological issues using pre-acquired data from a service evaluation in a research study claiming in its title to be prospective?
  3. Barry

    The CFS deconditioning hypothesis

    I'm not talking about pwME, but I would not be surprised if there are people whose only problem is deconditioning, but very severe, then there may be a tipping point beyond which it may be very difficult to work your way back out of it without help.
  4. Barry

    The CFS deconditioning hypothesis

    I'm not sure. Perhaps @PhysiosforME can answer this one? If someone's sole problem genuinely is severe deconditioning, possibly left over from some other physical ailment that has subsequently recovered, is there a level of deconditioning severity that might require extreme effort (rather than...
  5. Barry

    UK: Physios for ME

    Your group really is amazing @PhysiosforME, in the best every way. Huge thanks, huge congratulations, and keep up the tremendous work. You really are making a very positive difference for pwME I'm sure.
  6. Barry

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    Psychiatrist 1: How do you empathise? Psychiatrist 2: I'm told that if you need to ask there's no point asking. Psychiatrist 1: So how do you empathise? Psychiatrist 2: What did I just tell you! I couldn't get an answer either, when I asked. ETA: Not aimed at all psychiatrists, there are many...
  7. Barry

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    At first I thought it looked possibly enlightened with Not Yet Explained Symptoms, until I then realised: So I conclude they are likely doing their usual trick of trying to pick up on current criticisms and just hang a few psycho-baubles on them.
  8. Barry

    The Times: Chronic fatigue syndrome: ME families accused of child abuse

    It should be incomprehensible shouldn't it. But it's what seems to happen when a certain cabal of psychiatrists presume expertise way beyond their competencies, and have the influence to convince the establishment they are right. Brilliant support @PhysiosforME, so very good and morale...
  9. Barry

    Open The impact of food on cognition: Potential implications for brain fog in ME;24 June 2020 online

    Yes, badly worded. Presumably it should say "Apart from ME/CFS, you must NOT have any other medical condition that affects memory or attention"
  10. Barry

    DecodeME - UK ME/CFS DNA study underway

    Before 2016 when I joined PR, my wife and I lived in blissful ignorance of all the controversy surrounding ME/CFS, and we still thought the sun shone out of the proverbial 'arris of the medical establishment and NICE. Was a bit of a shock discovering the truth.
  11. Barry

    DecodeME - UK ME/CFS DNA study underway

    Please don't assume you don't experience PEM; it is very easy to get the impression that only the more severe symptoms equate to PEM. But I believe it is also about symptom pattern, and how it relates to bouts of exertion, and that PEM severity goes hand in hand with ME/CFS severity. To try and...
  12. Barry

    I'm a physiotherapist. Seeing the impact of Covid on survivors will haunt me forever

    Not one she has given credence to I would imagine, as that is the default usually for pwME.
  13. Barry

    RCGP Online Zoom Call - Covid-19: A lifestyle disease

    Although I'm far from a shining good example, if some of the risk factors for severity can be reduced by lifestyle choices then it is valid to address that I would think.
  14. Barry

    DecodeME - UK ME/CFS DNA study underway

    Don't seem to. I think they missed a bit of a trick here, because it is the expected norm these days, out of politeness if nothing else, to send a confirmatory email when someone registers or signs up for something. A slight omission in public relations I think. But I also appreciate this is...
  15. Barry

    DecodeME - UK ME/CFS DNA study underway

    Me too, very much so.
  16. Barry

    DecodeME - UK ME/CFS DNA study underway

    I also read that in order to achieve the 20,000 suitable participants they need, they are hoping for around 40,000 applicants to choose from.
  17. Barry

    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    Yes, the individual data from the very few objective outcomes would need to be looked at. A very small % may have improved, same as maybe a very small % report so in the wider community. What would be really useful to identify is whether they would have met a proper diagnosis for ME/CFS just...
  18. Barry

    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    I suspect there will be a small minority of long time, severely affected sufferers who will inevitably therefore have also become badly deconditioned as a consequence. And that for just some of those their ME/CFS may have spontaneously recovered, but still left them with the consequential...
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