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Search Engine aimed at assisting Drs to diagnose difficult patient cases.

Discussion in 'Information and Resources' started by Kina, Jul 21, 2013.

  1. Kina

    Kina Moderation Team Lead

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    I came across this search engine today.

    http://findzebra.compute.dtu.dk/FindZebra/default/index

  2. Sasha

    Sasha Fine, thank you

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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I like the warning on the site that's it's only for use by medical practitioners. That will of course stop any amateurs using it...;)

    Strangely the warning only flashes briefly on the screen for me now, then vanishes. Maybe it trusts me now!

    The reference to 'House' isn't encouraging, as I understand that the programme had an appalling representation of ME/CFS, but that's probably irrelevant here.

    Anyway, I decided to give it a go with a couple of symptoms that are typical and common for us, but unfamiliar to doctors - muscle tension and muscle spasm. Guess what - CFS or ME did not appear in the lists.

    Depressingly, 'catastrophizing' did bring up CFS, and nothing else, and it's a WIKIPEDIA entry. :rolleyes:

    So much for "The retrieved information is collected from reputable sources across the internet..." ('About' page)

    Back to the science journals, and talking to each other...?
  4. Kina

    Kina Moderation Team Lead

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    It works better if you restrict your search and when you do that 'catastrophizing' results in zero findings. If you search multiple symptoms, you will see commonly diagnosed illnesses listed first followed by rarer mostly genetic disorders which is the whole point of the search engine. It's particularly relevant to ME/CFS patients because many get misdiagnosed and such a search engine might help doctors and patients dig deeper.

    A search engine is just a tool to begin a search, not the end of a search. I wouldn't be so quick to dismiss such a tool.
    Valentijn likes this.
  5. peggy-sue

    peggy-sue

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    I entered muscle weakness, intolerance of exercise and intolerance of medication, and it gave me POTS....
    ;)
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry if I was too negative. There may be a place for it. :)

    I was just annoyed by the results of my test searches.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I just tried a multiple-symptom search and got nothing. I put in:

    "abdominal pain" dizziness ataxia weakness insomnia "blurred vision" disorientation.

    Welcome to PEM, FindZebra! :lol:
  8. Kina

    Kina Moderation Team Lead

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    MeSci

    I plugged your symptoms in and got:

    1 Kohlmeier-Degos Syndrome
    2 Episodic ataxia
    3 Vogt-Koyanagi-Harada disease
    4 Acute Intermittent Porphyria
    5 Cryptococcosis
    6 Pseudohypoparathyroidism
    7 Waldenstroms Macroglobulinemia
    8 Postural orthostatic tachycardia syndrome
    9 Post-concussion syndrome
    10 Ataxia, Friedreich's
    11 Familial dysautonomia
    12 Acute intermittent porphyria
    13 Tolosa-Hunt Syndrome
    14 Machado-Joseph Disease
    15 Cataract, Ataxia, Short Stature, And Mental Retardation
    16 Hereditary coproporphyria
    17 Dopamine beta-hydroxylase deficiency
    18 Porphyria variegata
    19 Multiple System Atrophy
    20 Coproporphyria, Hereditary
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    How did you search? Did you put punctuation marks between the symptoms? I still get nothing using the default search option. I had to give up looking at the 'About' page to try to learn about the different settings, as the page seemed to have hiccups - it kept jumping up and down and was exhausting my eye muscles.
  10. Kina

    Kina Moderation Team Lead

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    No punctuation -- I searched:

    abdominal pain dizziness ataxia weakness insomnia blurred vision disorientation
    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh right - yes, that gets that list. So it clearly doesn't like double inverted commas, which probably means that it will look up anything abdominal and any kind of pain instead of abdominal pain. A weakness, perhaps. Thanks.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Strange - just did a test search of all the hits and all but one did have 'abdominal pain' when they had anything abdominal, except one which had 'abdominal colic', which of course is a type of pain. I wonder how/whether it knows where each symptom ends in the string of terms and the next one begins.

    It's clever, but rather unusual, in the way it searches.
  13. peggy-sue

    peggy-sue

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    Perhaps using a psychological descriptor such as "catastrophising" isn't neccessarily a good idea. ;)

    I didn't use any inverted commas, or uninverted ones.
  14. Sea

    Sea Senior Member

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    Looks very interesting, thanks Kina
  15. WillowJ

    WillowJ Senior Member

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    SOC and merylg like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I was testing it for sensitivity, specificity, false-negatives and false-positives. Some doctors think that their patients are drama queens or hypochondriacs, and some may have heard the term 'catastrophising'/'catastrophizing' and search for that, and with this and many other searches their wrong beliefs about ME/CFS will be confirmed if they get that as a result, especially if it's the only result, and even if it is Wikipedia! (A GP of mine, after assuring me that all my test results were normal, then admitted when pressed that he didn't know whether one was normal and proceeded to Google it! He seemed to think that this demonstrated a high level of internet savvy, and appeared to be completely unaware that generic searches can be misleading, and that there are reputable sites where one can check test results. So whether he would have a clue how to use FindZebra I don't know!)

    Double inverted commas are recognised by many generic search engines and they mean that they search only for that specific phrase, so that you don't get lots of irrelevant hits.
  17. Kina

    Kina Moderation Team Lead

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    The search engine is aimed at looking for rarer disorders so typing in one psychological term wouldn't yield any meaningful results. It's not there to provide a definitive diagnosis either. It's actually quite interesting to see the changes if you add symptoms one at a time. Adding quotation marks, also changes the results too.

    Plugging in post-exertional malaise, pain, and exhaustion results in:

    1 Autoimmune hemolytic anemia, warm type
    2 Post-transplant lymphoproliferative disease
    3 Camurati-Engelmann disease
    4 Celiac Disease
    5 Adenosine Monophosphate Deaminase Deficiency type 1
    6 Dengue Fever
    7 Bronchiolitis Obliterans Organizing Pneumonia
    8 Muscle phosphofructokinase deficiency
    9 Hereditary Angioedema
    10 Post-Polio Syndrome
    11 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
    12 Central post-stroke pain
    13 Antisynthetase syndrome
    14 CREST syndrome
    15 Primary familial polycythemia
    16 Ebstein malformation
    17 Autoimmune hemolytic anemia
    18 Patent arterial duct
    19 Post Polio syndrome
    20 Neuroleptic malignant syndrome

    If you google the same thing, you get results related to CFS only.

    I don't see any psychological disorders on this list which is a huge positive. If doctors use the search engine as a tool, they might find something they were missing. Instead of A + B + C always equaling X, it opens up other possibilities based on research and information entered into rare diseases databases. It's a much better search engine than google.

    I think it's a shame to dismiss something like this out of hand because it seems very useful.
    SOC, MeSci, Valentijn and 2 others like this.
  18. Firestormm

    Firestormm Guest

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    By hitting 'project' in their menu it opens the following, which, I guess helps explain to technocrats how the engine works :confused: Anyhoo... I understood this bit at least to represent the sources that they utilise. However, I would imagine as CFS/ME is generally considered a common condition - they must also feed into more general databases as well - I notice the Wikipedia syndromes category for example:
  19. Kina

    Kina Moderation Team Lead

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    The search engine really isn't meant to be used in this manner and if you add symptoms that are included in a diagnosis of CFS, then you will get results that suggest CFS. The only actual symptom that was added is exhaustion so it's not odd that CFS showed up. This likely isn't meant to be a tool used during initial diagnosis either. If anything, it might point a doctor towards more testing not less.

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