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  1. Adrian

    A general thread on the PACE trial!

    This is one of the issues with treatment as usual controls. The treatment that patients get is very unclear and variable so a comparison is very difficult.
  2. Adrian

    UK House of Lords/ House of Commons Questions

    Remember that the ethics committee and peer reviewers did not have information about LP so that makes it hard to understand the potential biases that may be caused due to the strong pressure within LP to say you are better and therefore be better.
  3. Adrian

    UK House of Lords/ House of Commons Questions

    The ethics committee didn't really approve the full Smile trial instead a sub committee (of 2 I think) approved a upgrading of a pilot study into a full trial. This they avoided real scrutiny. I suspect since the LP is a 'secret' process they also didn't have the chance to apply proper scrutiny...
  4. Adrian

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Wasn't Fodor someone that philosophers claimed was a linguist and linguists said was a philosopher?
  5. Adrian

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    By referring to them as treatments the implication is they are effective otherwise they would not be treatments. His initial question for the paper talks of why benign treatments are controversial but ignores the fact that they are controversial because they are neither benign or treatments...
  6. Adrian

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    If someone had both ME and CCI could the CCI interact with an ME process and make it worse?
  7. Adrian

    Article - A solution to psychology’s reproducibility problem just failed its first test May 2019 ScienceMag

    I think the reviewers are unlikely to check against the registered plan unless specifically asked. Reviewers are unpaid and it is part of the overall academic workload so will often be a light weight process unless something feels wrong (but that can just be a rejection).
  8. Adrian

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    I would assume doxxing is about making someones private identity public most scientists have public identities with names, institutions and email addresses listed on publications. The FoI is read along side GDPR in the UK so that personal information will not be released although the names of...
  9. Adrian

    More PACE trial data released

    It would be good to push for the step test which I think you requested and the actual eq5d data rather than the uk summary scores
  10. Adrian

    Building an evidence base for management of severe ME (including sleep management)

    I do wonder if there should be some sort of data collection system recommended by the NICE guidelines particularly ensuing harm to patients is recorded (since the yellow card system doesn't extend to advice and non-drug therapies).
  11. Adrian

    Building an evidence base for management of severe ME (including sleep management)

    I'm wondering if an approach would be around a survey of patients or similar data collection exercise to see what people had been advised, tries what combinations seemed to work, which ones caused things to get worse etc. The issue is probably that severe patients are not up to a complex survey...
  12. Adrian

    Building an evidence base for management of severe ME (including sleep management)

    I do remember asking about simple exercises for my daughter to keep joints moving and got a physio appointment and some suggestions. None of it was about pushing. But that was me asking because I knew an adult in hospital who was given such simple exercises and then helped to build up muscle...
  13. Adrian

    More PACE trial data released

    I do wonder if they set out to create uncertainty in the data provided as well as trying to give the minimum amounts so they didn't give the Eq5d values just the uk summary.
  14. Adrian

    More PACE trial data released

    Especially since they dropped accelorometers due to the load on patients.
  15. Adrian

    More PACE trial data released

    I was hoping for the 5 dimensions which is really what the EQ5d scale is. The single value is then a country interpretation a while ago there was a paper pointing out that some treatments are only worthwhile in some countries but not others as the utility function applied to the different scores...
  16. Adrian

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    Often people will patent prior to publishing or in the US you get a years grace after publishing (I think). A patent in itself is publishing in that after a year the patent filing gets made public and others can see what and how you are doing it. The basic notion is that the filing should allow...
  17. Adrian

    SMILE trial data to be released

    Personal data can only be shared for a predefined purpose so if a school hasn't declared data can be used for research then it can't be used for that purpose and where consent has been given for that purpose. GDPR is much stronger around consent and how explicit permission needs to be. However...
  18. Adrian

    SMILE trial data to be released

    I think that is the case there is also an issue that this is school attendance for a week in the reporting period which is flexible which I think can add additional biases in terms of which week someone reports. I'm less likely to do stuff and certainly fill out forms when my daughter is less well.
  19. Adrian

    SMILE trial data to be released

    They used some imputation techniques to add in missing data but I think you need additional variables to be able to do this (things like age, sex, .... ) as you build a model of the relationships between the variables and use those to fill in missing values. In there paper they did look at the...
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