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Bristol Randomised Trials Collaboration

Discussion in 'General ME/CFS News' started by Sly Saint, Sep 12, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Bristol Randomised Trials Collaboration

    "
    The BRTC designs and conducts high quality pragmatic randomised controlled trials (RCTs) in primary and secondary care, as well as non-NHS settings such as schools and in public health. We also undertake complex trials and feasibility studies which include methodological research. We currently have 27 open trials to a value of approximately £30million.

    The BRTC has considerable expertise in the key methodologies needed to design, conduct and analyse RCTs including large multicentre trials."

    http://www.bristol.ac.uk/population-health-sciences/centres/brtc/

    Current trials
    include:
    MAGENTA What is the best model for delivering specialist NHS Chronic Fatigue Syndrome or Myalgic Encephalopathy

    FITNET-NHS

    An RCT investigating the relative clinicaL and cost-effectiveness of the FITNET-NHS (Fatigue in Teenagers on the interNET in the NHS) intervention compared with Activity Management, amont children with Chronic Syndrome or Myalgic Encephalomyelitis (CFS/ME) who do not hae a local NHS specialist CFS/ME service.

    http://www.bristol.ac.uk/population-health-sciences/centres/brtc/current-trials/

    I had not heard of this BRTC before.
    Just found it when looking at a new trial for Parkinsons (it could be ok, don't know but a few alarm bells went off).

    "The University of Bristol in England is leading a five-year, €10 million study aimed at finding ways to better integrate care for Parkinson’s disease patients while lowering costs, the institution recently announced. "

    https://parkinsonsnewstoday.com/201...prove-parkinsons-patient-care-uk-netherlands/
    https://www.eurekalert.org/pub_releases/2018-09/uob-nm090618.php
     
  2. Trish

    Trish Moderator Staff Member

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    If MAGENTA and FITNET are examples of their best quality clinical trials, I hate to think what their less good trials look like. No wonder Bristol Uni. does all they can to stifle criticism of Crawley and her pals. They are great money spinners for the University.

    Something rotten at the heart of Bristol University. @dave30th have you seen this?
     
  3. Andy

    Andy Committee Member & Outreach

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  4. Barry

    Barry Senior Member (Voting Rights)

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    It would be good to know how they might justify this. Stating past trials as 'evidence' just would not cut it. A car mechanic stating how many cars they have serviced is not much good, if the cars all broke down due to shoddy workmanship. It feels like a statement that needs calling out. @dave30th?

    Maybe some of their researchers have written good works on how trials should be run? And then shown that their trials have abided to that? And very usefully, identify which of Bristol's trials have not?
     
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    The paediatric physio from the Bath CFS service told me at the NICE scoping mtg in May that the Magenta trial results were in and looked good, ie their treatments had worked! So watch out for some strategically timed headlines, maybe just before their safeguarding/FII/PRS training day in early December...
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    no surprise there then; their results always do until someone looks at the detail.
     
    Inara, MSEsperanza, Woolie and 10 others like this.
  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    This group of researchers has learned from the exposure PACE has gotten I'm sure.

    I expect that there will be some fuzziness around the initial choice of co-hort (how they qualify). It would be interesting to know if some parents tried to sign up their child for the trial but were rejected. But there may be some self-selecting going on if some people have become more wary of signing in the first place. So who would that leave?

    I suppose we will be 'amazed anew' at how they find ever more insidious ways to make lousy data look like a gem.

    It would also stand to reason from all this that since they seem to have access to much more money than any bio research that they have made some sort of assurances that their work will be cost effective.

    Is there any means available to disprove or even render it questionable as true?
     
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    And then there was this today from Bristol. Ridiculous:

    http://www.bristol.ac.uk/news/2018/september/reproducibility-network-.html
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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  10. Andy

    Andy Committee Member & Outreach

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  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Well good luck to them. Though in truth it sounds a lot like management at a coal plant being designated as the arbiters of what quality breathable air might be like.

    ETA: If only there were the equivalent of effective gas masks for crappy psych trials. Some of them have been pretty whiffy to date.

    ETA: excellent eg of my short term memory issues. Had no idea I'd already posted. :rolleyes:
     
    Last edited: Sep 12, 2018
  12. Barry

    Barry Senior Member (Voting Rights)

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    Yes. I think the tobacco companies managed to pull that trick off for many years.
     
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'm getting more and more pissed off by Bristol Uni. It really seems like this is a dangerous organisation run by people totally lacking in integrity.
     
  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    One thing the University of Bristol has in it's favour in terms of trial design is that they have received vast amounts of world class advice on this from the many people who have commented and written on Prof Crawley's work.

    I hope that the BRTC formally acknowledge the information and time people have given towards helping them at no charge to the University, certainly @dave30th deserves a special mention.
     
  15. Adrian

    Adrian Administrator

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    One of the joint heads of this unit Prof Chris Metcalfe is an author in the Magenta and Fitnet protocols.

    So there expertise in allowing meaningless trials (where the outcome measures have no value). Its not clear if he knows about the issues with switching from a feasibility study to a full trial and including the feasibility patients. But its not looking good for that whole unit.
     
  16. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    When one network (the old boys network) is responsible for so much damage to the rigor and reliability of UK science, what should be done? ... Ah, of course, a new network. That should fix it!
     
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Is this the kind of issue where S4ME could use the amazing brainpower and knowledge of its members to contact the Prof is promoting this?
    Any volunteers @Lucibee @Graham @Woolie etc, and apologies to those I've omitted.
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    It is ridiculous to have people like this sharing their expertise with others. We need to stop the rot somehow.
     
  19. Woolie

    Woolie Committee member

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    Oh, this is a name I've heard. He has some interesting things to say. ie. actual genuine expertise in research methodology. He's interested in open, reproducible science, and has been a voice for change and reform in research practices.

    But I do seem to recall him defending the PACE trial. At least, that's my recollection. Perhaps I'm mistaken...
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    I feel like I remember him being keen to avoid criticising PACE & Crawley too. I don't remember a defence though.
     

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