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  1. Adrian

    Royds Withy King - The PACE trial – “one of the biggest medical scandals of the 21st century”

    That looks interesting in that it's in an unusual place the website appears to be a legal one. In the "who are we" section they say:
  2. Adrian

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I would see it as a step in the right direction. Good news is if Chris Ponting gets a decent amount of funding for a well constructed research project. From what I've heard he is good so I have faith that he can construct the project but as always funding may be the issue.
  3. Adrian

    UK CMRC 2018 Conference held September 19 & 20 at Bristol

    So IiME have a closed session before the main conference for researchers to exchange early results. Also I think it would be good to have smaller sessions between researchers from different fields to try to build research proposals across the fields. But yes it would be good to be open for the...
  4. Adrian

    UK CMRC 2018 Conference held September 19 & 20 at Bristol

    I think with the latest changes it may be interesting to attend although in the past non-researcher sessions were limited. But even if they have a shorter session that may prove interesting now they are having more patient involvement on the board. There may be important lessons from PACE (in...
  5. Adrian

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I think more importantly I think Chris Ponting looks like a good researcher and one who has been supportive of people with ME. I take this as a very positive signal.
  6. Adrian

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I wouldn't read it that way. I would see it as a call to understand mechanism with the second part separating out potential treatments from mechanism understanding.
  7. Adrian

    (UK) Law changes for charities 2018

    It affects this forum as well I've not had time to catch up with the act but need to soon for work. I believe the best practice for privacy has been to have opt in for contact rather than opt out for some time.
  8. Adrian

    Esther Crawley

    I think its a way to avoid proper scrutiny from the ethics committee. I had assumed that phase 1 trials were effectively testing feasibility. I did hear that Bristol Universities medical dept failed to get a 5 star rating and that Bristol has a habit of shutting non-five star rated...
  9. Adrian

    DWP seeking CCTV footage against disabled

    I suspect that is a breach of the DPA unless the CCTV is collected for that purpose and people agree or are warned.
  10. Adrian

    Tuller: Trial By Error: Our Exchange of Views with BMJ Open

    I think journals just seem to make up rules but never expect to take the difficult decisions to enforce them. They saw a get out with the response from Bristol so went with it.
  11. Adrian

    MitoQ spam email warning

    If they have been hacked and your personal information disclosed one thing to ask for is that they pay for credit checking services.
  12. Adrian

    Zaher Nahle leaves Solve Me/cfs

    He may be going on somewhere else to do more with ME. We need the best people to come in and they may not stay but if they make a difference whilst here and carry the message on to other places and other researchers then that is important.
  13. Adrian

    Can we trust results from early clinical trials?

    I think also small initial trials often have better results than larger follow up trials (don't know why could be something to do with patient selection?)
  14. Adrian

    PACE trial TSC and TMG minutes ordered released

    I really don't like the argument that publishing minutes stops debate. One research project that I ran we have quarterly 2 day meetings most of that time would be discussion and not minuted. But we also had a formal project meeting where decisions, finance, milestones, changes to the project...
  15. Adrian

    PACE trial TSC and TMG minutes ordered released

    I took that more as a comment that it is not the ICO's job to judge the integrity of the researchers and that comments made in the judgement were not intended to do that. I tend to agree that people in authority should have their judgement and integrity challenged. But I think the ICO shouldn't...
  16. Adrian

    Trial By Error: A Letter to Archives of Disease in Childhood

    I have issues with the feasibility study because of the trying it on children first. But I think the ethics committee really go it wrong in terms of allowing the change fro a feasibility study to a full trial. They should have treated it as a new application - also checking things like power...
  17. Adrian

    Zaher Nahle leaves Solve Me/cfs

    He strikes me as someone who is ambitious. I wonder if he just felt he had set up some initiatives and that was as far as he could get. Sometimes different skills (and interests) are needed to set things up and to keep them running.
  18. Adrian

    How to follow up on the Carol Monaghan debate in Westminster

    I think political pressure to take the issues seriously is a good idea. If I remember they had no justification for dismissing Courtney's comments which included pointing out their own outcome switching. I think we need to be careful about the nature of the pressure. Basically they have done...
  19. Adrian

    Funding of ME/CFS research in the UK

    @Graham looked at the funding figures for his video a while ago
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