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  1. Lucibee

    Who was it that said being in support groups leads to poor outcome?

    Ah - that's why I couldn't find it. "ME group membership" has morphed into "CFS group membership" by the time they get to the mediation paper. Given that it forms such a key part of their theories, I'm surprised they didn't include it as one of featured variables. But then the whole mediation...
  2. Lucibee

    Who was it that said being in support groups leads to poor outcome?

    They had the data in PACE to look at this. Wonder why they didn't...
  3. Lucibee

    Who was it that said being in support groups leads to poor outcome?

    It's interesting to me that they don't ever seem to have formally tested this. Even if you find that an association is temporally related (ie, indicative of a causative process), you still need to do the experiments to check. It would be difficult to do in this case, because it would involve...
  4. Lucibee

    Who was it that said being in support groups leads to poor outcome?

    As far as I can tell, it is only prospective in the sense that they followed up patients after initial identification. All the factors measured (and found to be associated) were collected by questionnaire at least 6 weeks after the initial assessment, and for some, 5 years after. As Charles...
  5. Lucibee

    The ME Show

    I did. No response yet though...
  6. Lucibee

    The ME Show

    Indeed he did. I was expecting another episode too. But then when one didn't happen the following Monday, I must have rewritten my memory in the light of its non-appearance.
  7. Lucibee

    The ME Show

    Episode 9 was the last of the current series. I've asked whether there will be a new series soon...
  8. Lucibee

    30 parliamentarians from all parties calling for NICE to revise their guidelines on depression

    As far as I can tell, there are at least 2 different campaigns going on here. The second one (Wessely et al - complaining about NICE guidance being methodologically unsound) seems to be designed to create confusion about the first (Read et al - complaining about whitewashing of antidepressant...
  9. Lucibee

    A general thread on the PACE trial!

    And the closest thing to PEM in the manuals is termed "post-exertional fatigue" - which, even to me, means something quite different.
  10. Lucibee

    A general thread on the PACE trial!

    I doubt anyone reached the 30-mins exercise a day interim target. It would have seemed sensible to at least record this somehow (especially as it gives an indication of treatment compliance), but oddly, they didn't.
  11. Lucibee

    A general thread on the PACE trial!

    I've had a look through the GET manual to see what was specified: The only definition or example of "low intensity exercise" given in the manuals is gentle walking. It seems they relied on Borg for intensity.
  12. Lucibee

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

    It's more about what they *could* be recommending - access to services, ie, specialist nurses for severe ME in every area. I don't think they are as obsessed with cost as you make them out to be. I'm reliably informed that if every health professional followed NICE guidance to the letter, the...
  13. Lucibee

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

    By "things", I wasn't necessarily referring to drugs (medicines). NICE guidance is about more than drugs.
  14. Lucibee

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

    I've been corrected by my better half: When done well, it should be a description of what is best practice worldwide. They should be taking into account what is done elsewhere in the world. But not necessarily in the UK. It can be used to push for things not currently available in the UK to...
  15. Lucibee

    The Lancet: UK life science research: time to burst the biomedical bubble

    The report itself is here: https://www.nesta.org.uk/report/biomedical-bubble/ The Lancet are not the only ones to report on it. The Guardian and FT have also done "editorials" too.
  16. Lucibee

    The Lancet: UK life science research: time to burst the biomedical bubble

    The report itself is authored by a Professor of Physics and a Professor of Social Sciences Research.
  17. Lucibee

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

    Sorry if I'm being a bit naive, but given the absence of an adequate clinical guideline on ME/CFS, why haven't the charities produced their own? Could the MEA Purple Book be seen as a suitable alternative? At the very least, if such a document existed, stakeholders could then point to it and...
  18. Lucibee

    A general thread on the PACE trial!

    Is PEM an individual symptom? If so, why does the table say "number with symptoms"?
  19. Lucibee

    A general thread on the PACE trial!

    I wondered about that, but then the "individual symptoms of PEM" bit makes that a bit more doubtful. It's terrible that they didn't specify what they did here, given it's such an important factor.
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