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HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by MEMarge, Oct 22, 2019.

  1. Barry

    Barry Senior Member (Voting Rights)

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    "Chipping away" is exactly it. Chipping away at the structure of a building very badly built in the first place. The have no way to repair the crumbling structure that is being chipped away, so they just keep erecting more facades to make their building superficially look modern and mainstream. But those facades will eventually come down with the rest of the rotten structure, as the self inflicted demolition progresses.
     
  2. dave30th

    dave30th Senior Member (Voting Rights)

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    As I wrote in my post about the findings, and previously, a "shrewd sleuth" flagged this issue for me. I didn't discover it myself. That might have been "lilpink"--I'm not sure.
     
  3. dave30th

    dave30th Senior Member (Voting Rights)

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    Let's hope. In the US, it would be devastating and a serious career black mark to have to correct the ethics statements in 11 studies after having had to agree to a 3,000-word correction/clarification in another study. Going forward, it would be hard for such an investigator to convince his/her academic institution and journals that his/her research should be taken seriously. Given the circle-jerk nature of this domain of science in the UK, I don't really know what the repercussions here will be, if any.
     
    alktipping, sebaaa, Sid and 19 others like this.
  4. anniekim

    anniekim Senior Member (Voting Rights)

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    Lilipink has just confirmed to me it was them.
     
    alktipping, Sid, MSEsperanza and 10 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Did someone check whether the ethics statements in all eleven studies actually have been corrected by now?

    Stumbled across @dave30th 's piece from 30 October 2019 / Trial By Error -- Review (Reprise)

    Edit: At least one of the studies actually was corrected:

    Edit 2: Not sure though whether the correction is correct ...

    see also the correction on 'Unidentified (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics, 2011, Crawley et al' --

    forum thread here.

    Apologies not able to read as much as would be necessary to get an idea of the whole issue....
     
    Last edited: Aug 25, 2022
  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was thinking that I've not got a good understanding of all the details of what happened here and that I'd like to look into it more - good bump!
     
  8. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    @Esther -- such things sometimes happen when I have a go at tidying up my drafts folder a bit.

    I realize I missed most discussions about the school absence study and think I should read through that thread first?
    Will have a look at the summary @Luther Blissett provided:

    So my main question now is whether the amendments made in the two 'corrected' papers I found posted on S4ME were actually correct and what has happened since ...
     
    Last edited: Aug 25, 2022
  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Unfortunately I now forgot almost everything I have been reading in addition.

    But I checked the first three papers mentioned in David's review/ reprise from 30 October 2019, and couldn't see a notice of correction on any:

    https://www.ncbi.nlm.nih.gov/pubmed/19452195
    http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-217
    http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-308

    It was a particularly confusing for me to check as the list doesn't comprise title and year of the papers.

    Only later I saw that a list with the titles is included in the report by the Health Research Authority's (HRA) and the University of Bristol.

    Still without years of publication, but anyway, here's the list of titles:

    'Report of a publications review jointly commissioned by the Health Research Authority and the University of Bristol'

    URL: https://www.hra.nhs.uk/about-us/gov...th-research-authority-and-university-bristol/


    1 Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME)
    http://adc.bmj.com/content/94/10/752.long

    2 Anxiety in children with CFS/ME
    http://link.springer.com/article/10.1007/s00787-009-0029-4

    3 The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database
    http://bmchealthservires.biomedcentral.com/articles/10.1186/1472-6963-11-217

    4 What stops children with a chronic illness accessing health care: a mixed methods study in children with CFS/ME
    http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-308

    5 Unidentified CFS/ME is a major cause of school absence: surveillance outcomes from school-based clinics
    (= 'The school absence study')
    http://bmjopen.bmj.com/content/1/2/e000252.full

    6 Treatment outcome in adults with CFS: a prospective study in England based on the CFS/ME national outcomes database http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/
    http://academic.oup.com/qimed/articles/106/6/555/1540077

    7 Depression in paediatric CFS
    http://adc.bmj.com/content/98/6/425.full
    https://www.ncbi.nlm.gov/pubmed/23619200

    8 CFS or ME is different in children compared to in adults: a study of UK and Dutch clinical cohorts
    http://bmjopen.bmj.com/content/5/10/e008830.full

    9 CFS symptom-based phenotypes in two clinical cohorts of adult patients in the UK and the Netherlands http://www.sciencedirect.com/science/article/pii/S0022399915300283?via%Dihub
    http://www.ncbi.nlm.nih.gov/pubmed/26800634

    10 Obesity in adolescents with CFS: an observational study
    http://adc.bmj.com/content/early/2016/09/21/archdischild-2016-311293.full
    http://www.ncbi.nlm.nih.gov/pubmed/27655658

    11 Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods
    https://hqlo.biomedcentral.com/articles/10.1186/s12955-018-1028-2#ethics


    Edit:
    Of those that I checked:

    #5, #8 and #10 have notices of correction.

    #1-3 and #11: Couldn't find notices of correction.
     
    Last edited: Aug 25, 2022
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  10. dave30th

    dave30th Senior Member (Voting Rights)

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    Thanks for checking into this! I've been meaning for a while to check, and haven't gotten around to it. Someone else had also pointed out to me that some were not corrected. I will take a look and alert Bristol and maybe the journals and the HRA. I can't really contact Esther directly at this point.
     
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  11. dave30th

    dave30th Senior Member (Voting Rights)

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    It's true. I've checked the papers against the recommended corrections, and most of the 11 papers have not been corrected. I don't know if there is a requirement to comply with such recommendations by authors and journals, or if it is advisory or voluntary. The fact is, they are all corrections to ethics statements, not to the main text of studies, and the authors were absolved of any blame. ADDED: Of course, i do not think it was warranted to absolve the authors of blame.
     
    Last edited: Aug 26, 2022
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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Well I'm sure they learned their lesson and won't do it again and again and again and so on and so forth. I mean it is a zero tolerance policy, after all. Which apparently means there are zero consequences.
     
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  13. dave30th

    dave30th Senior Member (Voting Rights)

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    I have a post on this, but Virology Blog is down for one of those reasons I don't get. I'll have to wait till Professor Racaniello fixes it or does whatever needs to be done to get it up again.
     
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  14. dave30th

    dave30th Senior Member (Voting Rights)

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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Brazen disregard, would be very interesting to hear what the HRA have to say about this failure to comply with their report given they had obviously gone out of their way to make the minimum possible findings to limit the impact on Crawley.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Worth asking of the HRA at this point:

    [​IMG]

    Usually ethics and compliance are rolled into one and it's basically 1% ethics and 99% compliance.
     
  17. dave30th

    dave30th Senior Member (Voting Rights)

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    interesting--in American English we use the singular for organizations/agencies/etc, not the plural: "...the HRA has to say about this failure to comply with its report..."
     
  18. Milo

    Milo Senior Member (Voting Rights)

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    Lilas, shak8, Peter Trewhitt and 2 others like this.
  19. dave30th

    dave30th Senior Member (Voting Rights)

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    Good idea, but they're really interested in retractions, not corrections.
     
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  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you, David.

    And another bump -- the HRA's letter of appreciation from 2019 to the Berkeley chancellor[*] :


    [*] Edit: see David's post here.
     
    Last edited: Aug 30, 2022
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