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  1. Adrian

    Letter from parents of children with ME to paediatricians in the UK

    The service is RUH Bath (i.e. the hospital trust) not the university. Crawley works for Bristol University. In general I'm not impressed with the letter. I think if someone didn't understand the issues then they wouldn't get much from reading this. I also object to the ME isn't CFS as there is...
  2. Adrian

    Michael Sharpe skewered by @JohntheJack on Twitter

    They claim that in trials GET does no harm but most trials didn't bother to look. PACE was relatively good in that it did look but I think they changed there definition of serious deterioration in the Lancet paper from the full protocol. It was hard to meet because the deterioration needed to be...
  3. Adrian

    Everybody was telling me there was nothing wrong

    I think these stories are far too common. My father new someone who was told he had stress headaches but it was too late when it turned out to be a brain tumor. Doctors are encouraged to dismiss patients these days as the worried well. I don't know what the motivations have been in the past...
  4. Adrian

    Everybody was telling me there was nothing wrong

    I suspect they did two different analyses one with men and women and a different one looking for correlations with income so they may not have explored the relationship. Then the journalist combines these in a single sentence. It would be interesting to know what else they looked at (say age...
  5. Adrian

    S4ME Q&A with Prof Chris Ponting - Question Collection Thread

    (Sorry a long complex question) I have a question around collecting, testing and interpreting samples. ME becomes worse with exertion and this can last multiple days. Should we therefore consider the body as a dynamic system when taking samples and thus always take them with an understanding...
  6. Adrian

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I think you should name them so that parents are warned. Last time QMUL or Barts (basically White) wrote a submission to NICE saying aids and adaptations should not be given to patients.
  7. Adrian

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I think if anyone has paid they should ask for a refund because the CFQ (not scale) is not fit for purpose in measuring fatigue and it certainly isn't a scale.
  8. Adrian

    Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate, Comhaire 2018

    Its a case of methodology and understanding the algorithms. When training a classifier on data you can give very good results on training data with low error it doesn't mean that the classifier will generalize at all to any unseen data or it that it hasn't picked up on irrelevant features in the...
  9. Adrian

    Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate, Comhaire 2018

    But when generating a formula like this based on the data you need separate training and test sets otherwise the regression will just pick up on random variations within the given test set based - that is what the regression optimization is designed to do. The way that you know if it works is to...
  10. Adrian

    First 3D printed human corneas

    I know that at least one 3d printer manufacturer is printing parts of its printers. But I don't think they deliver half a printer and expect you to print the rest out yourself. But they are working on printing metal, electronics etc so perhaps one day!
  11. Adrian

    First 3D printed human corneas

    Machine learning techniques would certainly find patterns in data that humans wouldn't but care needs to be taken that they are not superficial features of the data or collection devices. But the big issue is availability of large volumes of data. Here there is work on things like nano sensors...
  12. Adrian

    Everybody was telling me there was nothing wrong

    I think that shows the danger of things like MUS.
  13. Adrian

    Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) with sodium dichloroacetate, Comhaire 2018

    I was a bit confused about this because you seem to have 5 responders and 5 non responders. I assume you did a regression calculation to generate a hyperplane that separates the two groups and this gives the equation you quote and hence the ROC curve. However, its normal to use different data...
  14. Adrian

    Esther Crawley's contribution to #MEawarenessweek

    They come from the revolutionary communist party I believe.
  15. Adrian

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    There isn't really any evidence to point to in these areas. Without a good understanding of mechanisms its just clustering of reported symptoms and people making guesses over what is important/different.
  16. Adrian

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    Its fair to consider them in the guideline scope which I assume says they can look for evidence and give advice on that. I suspect they will find very little evidence but if they do look at what causes deterioration they they may find some evidence for too much activity (or anecdotal evidence...
  17. Adrian

    Recommendations for NHS referral requests in the Brighton area please

    I think @Graham is somewhere near the area
  18. Adrian

    Michael Sharpe skewered by @JohntheJack on Twitter

    I'm clearly missing out on some history here.
  19. Adrian

    Michael Sharpe skewered by @JohntheJack on Twitter

    Just to point out that this is an Edwards who worked at Liverpool hospital and seems to only have published 2 papers. Not Jonathan Edwards.
  20. Adrian

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I assume she didn't understand why they are meaningless.
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