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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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You have No Right to your Medical Records

Discussion in 'General ME/CFS Discussion' started by golden, Apr 11, 2013.

  1. golden

    golden Senior Member

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    Clear Light
    http://m.gponline.com/article/1177955/GPs-fear-legal-threat-rising-workload-records-go-online

    With an illness like M.E.

    facing a multitude of discrimination and false beliefs

    I find it particularly important to view the written records the G.P is making of my consultation.

    I feel any human error or mis communications may then be easily and quickly rectified meaning accurate patient care.

    In my own medical notes there contains 1) loss of data 2) omission of symptoms I went in with 3) mis-diagnosis eg. POTS as a panic attack 4) narrow diagnosis missing the whole picture 5) And one particularly nasty Doctor deciding without any physical testing at allow acknowledgement of my physical symptoms that it was basically all in my head.

    I don't want to be subjected to the whims and guess work and moods of a G.P. writing any old unscientific rubbish in my notes.

    This is how error upon error is built up.

    Oh the good old days.
    Allyson, Xandoff and sianrecovery like this.
  2. GracieJ

    GracieJ Senior Member

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    I've requested full copies of medical records several times over the years, and am always amazed at the mythical overall picture represented, even with a doctor fully on my side, and maybe just mishearing or misconstruing something I said. We have/need as much right to copy, amend, append, and challenge what is in those as much as any other legal aspect of life, especially considering those same records can be used to prove something for us or against us in court. It's no longer "their" in-house medical notes. It's a legal document, and it needs to be accurate.

    In reference to the article, two points:

    In the case of suspected abuse, there are other avenues doctors are legally bound to follow without having to bury their suspicion in a medical record.

    If my doctor suspects I may have cancer, I want to know about it RIGHT NOW. Duh. Full disclosure!! He's getting paid to give me his professional opinion.
    golden likes this.
  3. Xandoff

    Xandoff Michael

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    Northern Vermont
    I have never thought of myself as a victim of this disease. I am however a victim of our broken medical system. It starts at the top. As long as ME or FM/ME or CFIDS is considered a cuckoo diagnosis, we will not be received as a patient but a cuckoo bird by the medical community.
    golden and ggingues like this.
  4. Tristen

    Tristen Senior Member

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    I found that many practitioners chart the best of my condition often leaving off my more significant complaints. I think they do this for their own look good, rather than for my benefit. This is why I take my own list of symptoms and give to the doc for my chart. Plus, I always get copies of my records.
    Xandoff, golden, Allyson and 2 others like this.
  5. maryb

    maryb iherb code TAK122

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    The latest one from my GP's ,
    If you ask for a copy of blood test results they leave off the normal ranges, so that they tell you?????? my copy told me absolutely nothing - I found this out after my GP put a copy in for a consultant I was going to see, lo and behold all the ranges were in that one. They think they're so smart don't they, I have no respect for them at all.
  6. Esther12

    Esther12 Senior Member

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    There was loads of weirdly wrong stuff in my medical records. Some of the usual patronising CFS stuff, and people claiming I'd found there advice really helpful when I'd made it quite clear I had not, but also just claiming that I'd done certain treatments etc when I hadn't - which must have been honest mistakes (it served no-ones interests to deliberately get it wrong) but were pure fiction.

    It's particularly worrying as many people see medical records as 'truth'. I felt quite lucky that most of the errors in my records weren't harmful to me!
    Xandoff and golden like this.
  7. Allyson

    Allyson *****

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    Australia, Melbourne
    yes, good thread gthanks Golden; i have been subjected to your point 5 too - it was horrible and esp in light of 3 other positive diagnoses from specialists - rather weird
    - i have not looked at my records but may request them one day to make a complaint about tht doctor - it all takes time and energy though!
    Xandoff and golden like this.

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