The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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How to survive the medical misinformation mess

Discussion in 'General ME/CFS Discussion' started by Countrygirl, Oct 27, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    http://onlinelibrary.wiley.com/doi/10.1111/eci.12834/full

    Not specifically about ME, but we can say 'Amen' to this with bells on.

    Here is a small extract:
     
    pattismith, Wave, Jennifer J and 18 others like this.
  2. Wishful

    Wishful Senior Member

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    I think I heard about this, or at least something related, but I think it had a different name and the focus was on minimizing unnecessary medical procedures: tests that produce useless results, prescriptions or treatments that don't do anything useful (aside from giving top executives bigger quarterly bonuses), etc.

    I think that a properly-designed medical self-help online service could greatly reduce the burden on the healthcare system. Doctors wouldn't be wasting time doing allergy scratch tests (50% accurate means you might as well flip a coin) or prescribing antibiotics for viral infections. Lots of complications, of course, such as making sure that people who really should see a professional do so quickly, and keeping the healthcare industry ($$$) from manipulating it for their advantage, but I think it's a good concept.

    A reliable site for what tests and treatments are proven valid, and which ones haven't proven valid, would be useful too. I was just looking into cholesterol treatments, since my doctor said that my good cholesterol was a bit low and that I should take fish oil. Well, a bit of online research showed that there isn't actually any reliable evidence that fish oil supplements actually help with cholesterol levels. Lots of claims, but no clinical verification. It would be nice to have a trustworthy site to check that sort of thing.
     
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  3. alex3619

    alex3619 Senior Member

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  4. alex3619

    alex3619 Senior Member

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    These exist. They are full of misinformation. The scale of the problem is that "reliable" sources are unreliable.
     
  5. alex3619

    alex3619 Senior Member

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    Take the PACE trial, with two Cochrane reviews supporting. it. The authors of PACE have stated in court that they were reviewers of the first. We know PD White wrote the protocol for the second. This information, and similar, formed the basis of medical guidelines around the world. I am reminded of the fad of blowing smoke up someones colon to revive them. Now we have the NIH and CDC and AHRQ and the Academy of Medicine, plus many Nobel laureates and others all distancing themselves and acting in different ways to overturn this nonscience.

    These metastudies never once questioned the numerous and egregious methodological failings, or asked why one of them, which introduced severe bias into the statistics, was deliberately done. We know it was deliberate from the 2007 PDW paper.

    Yet most doctors are probably still reading the CBT/GET propaganda in various sites purporting to provide reliable medical guidance. The BMJ just published a completely different guide for ME that is very different. The narrative is changing with scientists and bureaucrats around the world. The CBT/GET medical fiasco is slowly being revealed.

    And still many support it.

    This is not, however, an isolated event.
     
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