Discussion in 'Information and Resources' started by Kina, Jul 21, 2013.
I came across this search engine today.
Kind of amazing it's taken this long...
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.
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...?
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.
I entered muscle weakness, intolerance of exercise and intolerance of medication, and it gave me POTS....
Sorry if I was too negative. There may be a place for it.
I was just annoyed by the results of my test searches.
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!
I plugged your symptoms in and got:
1 Kohlmeier-Degos Syndrome
2 Episodic ataxia
3 Vogt-Koyanagi-Harada disease
4 Acute Intermittent Porphyria
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
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.
No punctuation -- I searched:
abdominal pain dizziness ataxia weakness insomnia blurred vision disorientation
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.
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.
Perhaps using a psychological descriptor such as "catastrophising" isn't neccessarily a good idea.
I didn't use any inverted commas, or uninverted ones.
Looks very interesting, thanks Kina
some interesting stuff I found:
capillary leak syndrome:
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.
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.
By hitting 'project' in their menu it opens the following, which, I guess helps explain to technocrats how the engine works 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:
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.
You can also try a Google Site Search
Separate names with a comma.