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  1. Barry

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    But maybe he thinks he is ... :rolleyes:
  2. Barry

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Absolutely, because that is what the 'pause' is supposedly to facilitate, which is wrong on every level.
  3. Barry

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    What we need is a new NICE guideline to be developed and published ... why has no one thought of that I wonder ... :rolleyes::rolleyes::rolleyes::banghead::banghead::banghead:
  4. Barry

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Which clearly shows how closely wedded BACME still are to the old 2007 guideline. They can't help themselves ... nor pwME for that matter.
  5. Barry

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Interesting that in this statement they refer to ME/CFS, rather than the usual CFS/ME, which of course is their very name embodies. The two different acronyms typically identify which side of the BPS divide .
  6. Barry

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

    Presumably you need to be sure to cancel before the offer period expires, as they will have your card details.
  7. Barry

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

    Just a pity they are behind a paywall.
  8. Barry

    Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times (Sean O'Neill)

    I do the same when talking about my wife, to clarify that she is not in the least the sort of person to fall prey to being deconditioned and not work her way back out of it again.
  9. Barry

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    Are you saying you prefer for it not to be published?
  10. Barry

    Useful arguments regarding the evidence provided by psychological and biomedical ME research?

    I think “clinical experience” has the potential to be a self-fulfilling prejudice. In hospital once, I was on a cocktail of intravenous antibiotics, and developed an allergic reaction. One doctor said it was antibiotic X, and when I asked how he knew, he said “because it always is”. Which of...
  11. Barry

    Request for patients' stories harmed by GET

    Yes, I understand now.
  12. Barry

    Useful arguments regarding the evidence provided by psychological and biomedical ME research?

    Sharpe is a Professor of Psychological Medicine, who believes ME/CFS to be a psychologically rooted problem. Yet what he says here is untrue even for psychiatric conditions. A member of my family used to suffer from severe clinical depression, which used to fluctuate a lot. When she was really...
  13. Barry

    Request for patients' stories harmed by GET

    There were half a dozen or so named people on that Cambridge news item last Friday.
  14. Barry

    Request for patients' stories harmed by GET

    Whatever it was it's gone.
  15. Barry

    Petition: Don't let vested interests perpetuate harmful treatments for ME/CFS!

    I can't help wonder if someone in this group maybe knew someone who new someone, to have gained this insight so early. Was it all simply sharp perceptions? Or was there an informed ear to the right bit of ground? If so then would it be worth approaching this group, to see if any insights as to...
  16. Barry

    Articles on NICE guidelines 'pause'

    So, right there, is very good reason Miller would not want this to go through, because attention would then become more sharply focussed on why the safety of these treatments, including worsening of symptoms, was not more stringently monitored, recorded and assessed. I suspect there are...
  17. Barry

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Like the patients who have been saying for many years how GET has seriously aversely impacted their health. It's no good arguing a therapy can maybe help some people, if you totally ignore by design those saying they have been harmed by it.
  18. Barry

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Reading Sharpe's comment above makes me realise that being under the ministrations of a BPS psychiatrist is going to be pretty unenviable for those with genuine mental illnesses as well, if the belief is that outcomes can only be measured in terms of patients' self reporting.
  19. Barry

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Does MS not realise he is once again illustrating - to perfection - these people's inability to comprehend what @Jonathan Edwards and others have pointed out - that if the only way you can think of to do a clinical trial will result in evidence of very low quality, with all the attendant risks...
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