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Dangerous Medical Information In a Hub ~ Perspectives, please

  1. RockyMountainMom profile image93
    RockyMountainMomposted 23 months ago

    As many of you that I've interacted with know, I have Lyme disease.  There is a great amount of controversy and misinformation surrounding this disease.  There are some very accurate and enlightening hubs here about this illness, clearly from patients who've experienced it.  A new hub states some pretty dangerous things about my illness, which is sadly not new in terms of available information about Lyme. 

    There are plenty of wrong facts about Lyme that can be stated that would unfortunately currently be supported by CDC and medical sites that need to update their information, and will probably have to eventually.  So a great deal of the dangerous misinformation Lyme patients are fighting against are still supported by mainstream medical institutions, but not by science.  It is taking time for each item to get corrected.

    The statements in this new hub, however, contradict even those sources.  This author sates that Lyme disease is dangerously over diagnosed.  On the one hand, they are entitled to their opinion.  On the other hand, even the CDC acknowledged this year that their previous estimate of 30,000 new cases a year was a drastic underestimate, with the number of new cases per year actually closer to 300,000 new cases per year in the U.S. alone.

    Because doctors are under-educated about this illness and testing is inadequate, and because new (and old studies) about Lyme have not yet been incorporated, hundreds of thousands of patients go misdiagnosed (like I did for 3 years, meaning this disease will likely be with me for the rest of my life, though eventually in remission, I hope---but in the mean time it has greatly reduced my quality of life and ended my career, which is really just the beginning of it's impacts on me and my family).

    There are probably plenty of typos in this post, as I'm so upset I'm shaking.  Any single person that reads a perspective like that one---that lyme is over-diagnosed (not realizing it is a dangerous opinion) could be harmed by it.

    Lyme is a very dangerous and fast growing epidemic, and getting diagnosed and treated is already hard enough.  If a federal biologist with a tick bite, rash, and facial paralysis (as was my situation) can't get treated.....those who are misinformed and unaware don't stand a chance against this illness.

    1. TIMETRAVELER2 profile image95
      TIMETRAVELER2posted 23 months ago in reply to this

      I had a similar, although not so serious, situation happen awhile back.  I commented and let the writer know that they were misinforming the public about a subject.  Instead of taking what I said as help, they became very ugly with me and acted as if I did not know what I was talking about.  In fact, I was a licensed professional in that subject!

      I got so mad I wrote my own hub about that subject to try and offset the misinformation.  Maybe you should think about doing the same.

      That person is the exact reason Google wants people to have authority when they write about health issues.  They are trying to stop dangerous misinformation.

      Unfortunately, other than writing your own hub, there is not much else you can do.  Believe me, I feel your pain.

      1. RockyMountainMom profile image93
        RockyMountainMomposted 23 months ago in reply to this

        Thank you, Timetraveler, I knew I would get some sound advice here.  It is too bad you got that response---for one as a professional, but also because I've seen your thoughtful comments and getting ugly is a very unfortunate response.

        I think based on this feedback that I've done what I can so far, in that I left a comment and have a few hubs on the general topic that cover those aspects that worry me here.  I think I was courteous in my comment, though I was honest about being upset/worried.  As a patient it was pretty offensive, but hopefully I wasn't offensive in response.

        I think this is good incentive to write more about the topic.  Some of what I write is for content sites, not because the money is good, but because on this topic, I like having the right information published.

        I faced a very similar situation on one of those sites, having seen an article with far more information than this one about to be published.  I wrote two thorough articles with correct information in hopes of bumping the erroneous one, but also wrote to the writing site.  Their initial response was brief, but then followed by a heart felt response and offer to send my email to the client.  I was really, really impressed with the company.  And in the end, the client's standards as far as the quality of writing caused them to reject the erroneous piece anyway.  They had published my work before, and bought two more posts on the topic.  So, I guess so far it is worth the stress to get good information out there (though unfortunately with Lyme, once tolerance for stress is considerably lower---which has led me more than once to look for assurances here).

        These are the  pros and cons colliding in terms of writing about a topic that we're passionate about.

        This is certainly a new perspective on google's take on authority on a topic....I hadn't quite thought of it that way until today.

        TAHNK YOU

        1. TIMETRAVELER2 profile image95
          TIMETRAVELER2posted 23 months ago in reply to this

          Yes, in fact they made a big point about the fact that this last update targeted health articles written without authority!

          1. RockyMountainMom profile image93
            RockyMountainMomposted 23 months ago in reply to this

            Traffic at one of my own blogs took a huge and sudden hit and a lot of my hub scores dropped, a few of which were health hubs.  So that could be why.....those topics are awareness motivated, so although readership spreads awareness, they are motivated differently than most of my other writing.  So I can handle it better than hits to other writing, actually, form a better-information-is-better-for-patients perspective.

    2. Judy Filarecki profile image94
      Judy Filareckiposted 23 months ago in reply to this

      I support your concern and frustration. I wish that there was more that could be done, not only in stopping miss-information, but also in the prevention, diagnosing and treatment of  this.

      1. RockyMountainMom profile image93
        RockyMountainMomposted 23 months ago in reply to this

        Thank you sincerely, Judy, on both counts!

  2. calculus-geometry profile image87
    calculus-geometryposted 23 months ago

    I'm with you! Hubs with bogus medical information are a pet peeve of mine and I have flagged loads of them.  Very few are ever taken down.  I can only assume they get lots of views and HP does not want to lose the income from them.

    1. RockyMountainMom profile image93
      RockyMountainMomposted 23 months ago in reply to this

      I'm glad you are noticing and flagging, though, all the same.  Bad science is a peeve of mine on it's own, but being sick with such a strangely political disease puts bad science (and info) applied to people's health in a whole new light!

  3. Snakesmum profile image88
    Snakesmumposted 23 months ago

    We sometimes hear on the news here in Australia, about people who are sure they have contracted Lyme;s disease, and are unable to get treatment.

    The medical profession here don't seem to believe that it is yet in Australia, but they seem to forget how much people travel today.  And we do have ticks, so why wouldn't we have Lyme;s disease?

    Sorry to hear about your problems, and hopefully, things will improve in both our countries soon.

    1. RockyMountainMom profile image93
      RockyMountainMomposted 23 months ago in reply to this

      Thank you, that is my hope as well.  It is everywhere but Antarctica.  And I think the questions really should be along the lines of your question---why wouldn't it be there?

      I'm glad to hear it is on the news, at least, and that people who don't have the disease are noticing.  We get a little coverage here, but the difficulty of receiving treatment seems to get lost in translation a lot of the time.  Or the same heading will air enough that just the soundbite sticks and not the critical pieces.

      I've read a lot of stories of suffering Australians.