Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Trial By Error: No Ethical Review of Crawley School Absence Study

Discussion in 'Latest ME/CFS Research' started by lilpink, Aug 17, 2017.

  1. Barry53

    Barry53 Senior Member

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    And EC et al decided no ethical review was required :rolleyes:. I suppose we should make allowances - it must be terribly difficult for people who seem to have no comprehension of ethics anyway :p.
     
  2. Daisymay

    Daisymay Senior Member

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    In his article, Dave Tuller said:

    In her response, Professor Crawley also referenced top-level admiration for her work. “The project has been of great interest to the Department of Education who included it last year as an exemplar in their training for attendance officers in the UK,” she wrote.

    I find this rather chilling, but maybe I'm reading too much into this..... for adults with ME we have DWP co-funding PACE, now for youngsters we have the Department of Education showing great interest in EC's research. So do they want to catch them young and change their aberrant behaviour before it gets engrained to save the state benefit system money down the line?

    And if the children don't improve with CBT/GET and their school attendance remains poor it can all be blamed on the children and/or parents.
     
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  3. Molly98

    Molly98 Senior Member

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    the more I read and begin to understand about this, the more it seems very unethical to say the least.

    As several have pointed out above, attendance officers are not medical at all. They are not welfare, they are not neutral.

    Generally they make parents and kids lives hell.

    I am very puzzled by this method of recruiting patients.
    Is this ever heard of for other childhood diseases?

    What makes them assume that unauthoried absent is down to illness or health issues. Most are not. otherwised they would be authorised.

    If parents have a child who is sick with ME, most parents would be worrying like crazy what is wrong with the child and taking them to the doctor many times, they would likely to be discussing with the teacher or schools their concern about their child's health, that they are sick and possibly that doctors don't know whats wrong.

    I don't get how trawling unexplained absence picks up ME. I just don't buy it.

    Do they do this for depression? asthma? gluten intolerance? anaemia?
    or anything else health related. they don't even trawl for head lice anymore, in fact if a child has head lice, the teacher can not even tell the child or parent but has to send an indiscriminate letter to all class parents just asking all parents to check their kid's hair for head lice as there has been a case in class.

    It seems to me that this was about recruiting for trials that she was perhaps struggling to recruit for and trying to find evidence that would keep her in a job and grow her clinic and justify funding, because so many kids have ME and she knows best how to treat them, when in actual fact a good proportion probably had depression, nutritional deficiencies or too many late nights on the Xbox.

    The other thing that seems rather odd is that if they wanted to identify kids who potentially had ME, surely the school nurse or even local gp clinics would be better equipped to know who is not attending school because they are feeling unwell as opposed to identifying all kids indiscriminately through attendance records. So kids who for many good reasons may hate school, or have been bullied, or have school anxiety or a million other reasons, such as having to care for a parent or sibling are called to one of these meetings to be interrogated on whether they may have ME.
     
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  4. user9876

    user9876 Senior Member

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    Although Crawley is the main author there are two other authors who are professors at Bristol. We should see them as equally culpable of failing to get ethical approval. As senior members of staff they should be checking.

    Also Bristol University should be exercising governance over the medical research processes. Clearly they are failing to do so.

    It doesn't seem like there is any actual comeback to anyone for failing to gain ethical approval but I think at the very least it should reflect badly on the reputation of those involved and the institutions.
     
  5. Cheshire

    Cheshire Senior Member

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    Does someone remember what actually happened with the SMILE trial (Lightning Process) ethical review?
    I remember that there was a problem because this "treatment" was tested on children while it had never been tested on adults, which is normaly impossible. But I don't recall on what ethical grounds it was finaly accepted.
     
    Last edited: Aug 29, 2017
  6. Invisible Woman

    Invisible Woman Senior Member

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    It also strikes me that Crawley is putting herself in a position where she can cherry pick cases, as she is the one who is, presumably, diagnosing ME.

    As there doesn't seem to be any independent verification of her diagnosis she could be using any old criteria she likes. Now, obviously I cannot say that she has done this, but she could simply be choosing children who do not have ME but who could be candidates for making her chosen therapy seem effective. There is no form of independent oversight or mechanism to police this.

    Given how threatening this must seem to both parents and children alike, I should think that there must be an element of coercion felt by some parents and their kids. Again no layer of protection or independent analysis.
     
  7. user9876

    user9876 Senior Member

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    I think Crawley claimed that CFS is different in children and therefore the trial should go ahead.
     
  8. user9876

    user9876 Senior Member

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    One of the additional reasons that objective measures should be used in ME trials for children is the coercion felt by parents to agree to treatments and give good reports. With the number of child protection cases that happen in the UK the threat is a very real consideration even when not made to a particular family. Crawley is doing trials with only subjective measures as she has learned how to get better results from PACE but I suspect the results will still disappoint her because her treatments are crap.

    I think that Bristol University should be made to pay back money to research funders where open label trials are only using subjective measures as they should know the results will be meaningless. The problem is some academics seem to think research funding is to further their careers not to help patients - which is why so many were saying they can't share data in case others publish papers before them.
     
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  9. lilpink

    lilpink Senior Member

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  10. lilpink

    lilpink Senior Member

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  11. lilpink

    lilpink Senior Member

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  12. lilpink

    lilpink Senior Member

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  13. Barry53

    Barry53 Senior Member

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    Basically, medical science would be great if it weren't for the patients :rolleyes:.
     
  14. slysaint

    slysaint Senior Member

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  15. anni66

    anni66 mum to ME daughter

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    Was there not also a " Helsinki" issue re fully informed consent?
     
  16. JoanDublin

    JoanDublin Senior Member

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    I've posted this on your behalf under David's blog as I think you articulate so very well the sheer horror that children and parents face in these type of situations, when their very liberty and well-being is threatened to the point where they would agree to anything or contemplate suicide
     
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  17. JoanDublin

    JoanDublin Senior Member

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  18. Valentijn

    Valentijn Senior Member

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    That was PACE (unless there's been another incident), where the principal investigators didn't disclose their financial ties to the insurance industry. It appeared in the published articles, but not in the patient consent forms.
     
  19. anni66

    anni66 mum to ME daughter

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    I thought consent was given for research which in effect was a clinical trial, but could be wrong
     
  20. lilpink

    lilpink Senior Member

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    Unfortunately the merging of these threads makes for some confusion I think. I have asked the mods to re-title it to reflect Tuller's blog title and also to give me the opportunity to edit the first post to make it easier for newcomers to understand what's going on. It seems a merged post is un-editable in the normal way.
     

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