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  1. Barry

    Sir Vince Cable has signed up to Dr. Myhill’s MAIMES Campaign

    And still we have Jeremy Hunt running the show.
  2. Barry

    Sir Vince Cable has signed up to Dr. Myhill’s MAIMES Campaign

    Nonetheless his high profile endorsement is a major plus. Pure political power may not come with his advocacy, but his presence alone could help bring others round.
  3. Barry

    Forward ME Group minutes from meeting 7th February 2018

    Agreed. All that counts is effective communication; if it's ineffective it's a total waste of time and effort. I think of communication as a transmitter sending information to a receiver, and the receiver getting from the information what the transmitter intended. To me, communication is only...
  4. Barry

    Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome (2018) van der Meer et al

    I don't have access to the full article, and might not get the answer to my question even if I did. Can anyone tell me, without too much scientific complexity, how this study discriminated between sub-optimal effort due to physical effects, versus sub-optimal effort due to psychological...
  5. Barry

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    A rough analogy, albeit different timescales, is boiling a pan of milk on an electric cooker. For this analogy let's also assume the pan cannot be removed from the hob. If you wait until the milk is just coming to the boil before turning the ring off, the milk of course all boils over the sides...
  6. Barry

    Dr Myhill’s complaint to GMC about PACE authors.

    Excellent letter. I like the way you have noted how the PACE authors have never set the record straight for PwME (despite their being best placed to do so, and despite their proclamations of only wanting to do their best for PwME).
  7. Barry

    Journal of Health Psychology - New Trial Data Sharing Policy

    Yes, I posted about this going back aways in another universe ... http://forums.phoenixrising.me/index.php?threads/jhp-policy-on-data-sharing.53153/ Edit: I think all data should go into some sort of "trust house", where even the researchers cannot tamper with it.
  8. Barry

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    It would be good if science had a way to properly (i.e. objectively) measure energy efficiency for PwME. There must be ways this is already being done, in sport for example. Useful energy out divided by total energy in, per unit time. Energy in is relatively simple, just adding up calories...
  9. Barry

    Analysis of minister’s response in Westminster Hall PACE debate

    Been trying to get my head round whether it is unethical to fund a trial whose hypothesis is one you favour. I imagine it's how a great many trials might be funded. It clearly becomes unethical if the trial itself is unethically run, and especially if the researchers have any conflicts of...
  10. Barry

    Gary Burgess on his ME

    By which of course you mean the supposed go to source of information. And of course Wessely is very influential in the SMC ... http://www.sciencemediacentre.org/about-us/governance/ governance TRUSTEES The board of Trustees is the major decision-making body of the Science Media Centre and...
  11. Barry

    Analysis of minister’s response in Westminster Hall PACE debate

    Comment awaiting moderation.
  12. Barry

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    Absolutely. It's like part of an illusionist's trick. Take something airy fairy and intangible, stick an arbitrary number on it, and then convince everyone that anything with a number must be solidly tangible and OK. Unfortunately it's an illusion that seems to have been working far too well.
  13. Barry

    Gary Burgess on his ME

    My feeling always is that it's better to focus strongly on just a few powerful messages (or even just one) in a session, than try to sandblast people with everything all in one hit, and end up throwing lots of information at people, but transmitting no message that normal mortals can pick up on...
  14. Barry

    Gary Burgess on his ME

    Good blog @Gary Burgess and congratulations on forthcoming wedding.
  15. Barry

    Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

    Being angry is one thing, and I agree it can be a constructive driver of good endeavours. But it can also be very destructive. I'm only interested in the constructive sort, as I'm sure you are @Lilpink.
  16. Barry

    Dr Myhill’s complaint to GMC about PACE authors.

    Agreed, but that would be much less likely to convince a court, as even if there had been lots of good research over the years, I don't see a court taking it as a certainty PwME would have had a cure that enabled them to work again. Whereas there is a pretty solid causal relationship between...
  17. Barry

    Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

    My wife has had ME over 10 years, and it was only 18 months or so back I realised the weird situation PwME are in, especially as the PACE trial is home grown and has screwed things up for PwME all over the world. There is a major learning curve I found, on various fronts. I'm not a scientist...
  18. Barry

    Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

    Agree whole heartedly. Although in the past there have been massive attempts at raising awareness, it has been all-too-effectively stifled by those very powerful people who fear it. The big difference now is not simply about raising awareness, but raising awareness effectively, and that is a...
  19. Barry

    Dr Myhill’s complaint to GMC about PACE authors.

    Interesting. Can you clarify please @Lilpink.
  20. Barry

    Dr Myhill’s complaint to GMC about PACE authors.

    Absolutely so. Probably not something that would be so easy to pin down in a court of law though, as technically fraud. Whereas what Sarah Myhill is going for I think may have a good chance. I really hope so!
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