1. Guest, the 'News in Brief' for the week beginning 23rd November 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
    Dismiss Notice

Trial By Error: FOI Response from Bristol about LP Study; Correction in BJGP about MUS

Discussion in 'General ME/CFS News' started by Kalliope, Jul 1, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    3,578
    Likes Received:
    36,300
    Location:
    Norway
    FOI Response from Bristol about LP Study; Correction in BJGP about MUS

    Tuller has received a response to his FOI request with the University of Bristol about the LP-study and has learned:
    • The university was informed on Feb 8.2018 that the journal had raised serious questions about the study
    • The investigators, led by Professor Esther Crawley, did not provide the university with a copy of their final responses to the journal’s inquiries.
    • Despite the seriousness of the questions raised, the university decided not to conduct its own investigation to determine what happened with this study.
    He also writes about the BJGP correction concerning MUS:
    The British Journal of General Practice has now corrected the false statement in its 2017 editorial on the cost to the NHS of so-called “medically unexplained symptoms,” along with a notice indicating the correction.
     
    TiredSam, JaneL, oldtimer and 29 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    3,089
    Likes Received:
    21,120
    There seems to be a long tradition of researchers ignoring legitimate questions. yesterday I happened to be looking at the Tuskegee experiment on Wikipedia
    en.wikipedia.org/wiki/Tuskegee_syphilis_experiment

    The first dissent against the Tuskegee study was Irwin Schatz, a young Chicago doctor only four years out of medical school. In 1965, Schatz read an article about the study in a medical journal, and wrote a letter directly to the study's authors confronting them with a declaration of brazen unethical practice.[23] His letter, read by Anne R. Yobs (one of the study's authors), was immediately ignored and filed away with a brief memo that no reply would be sent.[24]
     
    Simbindi, Sean, alktipping and 11 others like this.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,817
    Likes Received:
    11,060
    I agree with Couch Turnip's comments on @dave30th's blog. Due to the inflated number supposedly showing what an expensive drain on the NHS those with "MUS" are, GPs may conclude, that patients with "MUS" are adding to doctors' stress and burden.

    Shifting these people over to "psych care" is assumed to save NHS money. I am not sure about this, but I will assume lab and imaging testing are more expensive than CBT and GET. Although this diverting of patients to BPS workers is short-sighted, as a number of these people will have organic health issues that are left untreated until somehow, somewhere, the penny drops.

    What these savings also do is allow governments to shunt funds off to more favoured projects, outside the health care realm.

    ETA: Thank you @dave30th for your continued, and much needed investigations and action for the ME community!

    ETA#2: for clarification.
     
    Last edited: Jul 1, 2019
  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,817
    Likes Received:
    11,060
    This is the ME Research UK article about misdiagnosis that cites two articles; one from 2010, and the second from 2012. Both articles noted approximately 50% of those diagnosed with "cfs" had been misdiagnosed (40% misdiagnoses in the first article, and 54% misdiagnoses in the second article): http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

    ME Research UK also receives calls about misdiagnosis and improvement after proper diagnosis:

    "Every year ME Research UK gets about 400 calls or e-mails from patients. A small number of these – not a flood, but a regular trickle – are from patients reporting that they have improved after being re-diagnosed with and treated for another condition. These conditions have included Addison’s disease, multiple sclerosis, sleep apnoea, primary mitochondrial disease, primary liver disease and paranoid schizophrenia – and in every case the caller has been content with the re-diagnosis and/or the new treatments it has brought."

    The authors of the 2019 study noted in this forum thread, @Graham, @Tom Kindlon, and @Brian Hughes, also noted about a 50% misdiagnosis of ME ("cfs'):

    https://www.s4me.info/threads/monit...h-service-specialist-2019-hughes-et-al.10173/


    The unchanged percentage of misdiagnoses over almost a decade is very concerning.

    It would be interesting to compare these percentages in other countries.

    Are they roughly the same in the US and Canada? Europe? Australia? New
    Zealand?

    ETA: spelling
     
    Last edited: Jul 1, 2019
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,181
    Likes Received:
    41,168
    Location:
    Canada
    So the journal raised issues with the paper and still published it. Cochrane did the same with its reviews. Medical journals with an international reputation and outreach are knowingly publishing papers and reviews that do not pass their own peer review criteria and disavow all responsibility in the matter. And do not respond when challenged on it. And refuse to correct and/or retract, even respond at all in some cases, when they find no reason to justify their reliability unless relentlessly being prodded into action, and barely at that.

    It seems pretty clear that there are pressures on those institutions, from somewhere with the power to apply such pressure, to promote the psychosocial alternative medicine model despite it being unable to prove itself in the normal process of the scientific method, to fast-track something that does not pass scrutiny while giving it the full weight and credibility of a system of checks and balances it did not pass. At enormous costs and consequences. The pressures may be political, self-motivated or otherwise, this is impossible to tell for now. But it is clear that this entire body of research is subject to exemptions from the normal process of science.

    Reckless and irresponsible promotion of pseudoscience, no matter the cost in human lives and suffering. This amounts to criminal endangerment. When this insane project is dead and buried and people start to assess what happened, the number one thing that will go in people's heads as they read through all this, and David's work will be prominent in it, is WTF? WTF?! How did this actually happen? WTF???!!
     
    Webdog, duncan, Mithriel and 10 others like this.
  6. large donner

    large donner Guest

    Messages:
    1,214
    Likes Received:
    9,242
    Does anyone have the actual figures for both handy?
     
    alktipping, DokaGirl and Sly Saint like this.
  7. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    1,037
    Likes Received:
    15,333
    Roughly, the calculated cost (and I'm not endorsing Bemingham et al's figures) was about 3 billion pounds in the year examined. The total NHS budget that year was around 100 billion. The cost of services for those of working age was about 30 billion. So the misstatement makes it seem like the costs eat up about three times the amount they actually do. It's a huge mistake with large cost implications.
     
    Annamaria, Webdog, Mithriel and 18 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,183
    Likes Received:
    9,992
    To the best of my knowledge this has never been looked at in NZ but they have done so in Australia, with similar results.
    Article: https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/
    Study cited by above article here: https://www.dovepress.com/epidemiol...memyalgic-peer-reviewed-fulltext-article-CLEP
     
    ukxmrv, MEMarge, rvallee and 9 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,817
    Likes Received:
    11,060
    If there was a universally agreed upon, appropriate case definition, either the Canadian Consensus Criteria, or the International version, many in the health professions would not be able to dump their so-called MUS patients into a ME ("cfs") wastebasket.

    As it stands now ME is a convenient dumping ground for "problem" patients, sometimes thrown in this garbage bin after a cursory assessment.
     
    Webdog, MEMarge, EzzieD and 2 others like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    27,612
    Likes Received:
    135,029
    Location:
    UK
    rvallee, Andy and Kalliope like this.

Share This Page