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CrowdMed: how to get and give diagnostic suggestions for complicated patients

Discussion in 'General Symptoms' started by WillowJ, Nov 17, 2014.

  1. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    http://blog.crowdmed.com/2014/11/are-doctors-only-ones-qualified-to_5.html

    Think you might have something diagnosable other than ME/CFS? Here's another option to help guess what to test for.

    Alternatively, if you have the energy and want to make an account and make suggestions (they're anonymous to everyone except the site, which tracks your suggestions and gives you an accuracy rating), that's possible, too.

    Top conditions being diagnosed over there?

    1. Fibromyalgia
    2. Chronic Fatigue Syndrome
    3. Lyme Disease
    4. Multiple Sclerosis
    5. Lupus
    6. Rheumatoid Arthritis
    7. Hypothyroidism
    ....

    Anyone surprised?
     
    Valentijn, alex3619, Wildcat and 2 others like this.
  2. dan062

    dan062 Senior Member

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    I used CrowdMed a couple of months ago. I have experience in IT and thought that using some of the neat things about the industry, like crowdsourcing, for medicine actually sounded like a great idea.

    Unfortunately, I can't say I was terribly impressed with the diagnostics. I think the above list speaks for itself, and if that's what's driving their 55% 'success rate' I'm even more suspicious. The actual functionality is excellent (in terms of uploading charts and results, etc) and I still believe the site has a lot of potential.

    The problem, IMO, is that the site seems to attract the attention of mostly non-experts unless you put down a very hefty reward fee to entice the 'bigger fish' (ie real doctors, present or retired) to comment on your case.

    To reach that level of usefulness, I'd be far happier simply paying a fixed fee up front (rather than specifying a 'reward'), particularly as people coming there are often drained of money (and may not have the resources to post exorbitant 'prize money') and even if one of the suggestions happens to be the correct one, you're still going to have to go to a real-life doctor and then float the idea (which is always a questionable way of doing things).

    I interacted with five or six 'guessers' and the disparity in quality couldn't have been more obvious. The one real doctor was the best (answered my questions calmly and with reference to actual studies). A 'psychic' from Las Vegas diagnosed me with 'heart failure' (despite my basically normal ECG), and an extremely zealous med-school student suggested a host of extremely rare diagnoses, none of which matched my symptoms in the slightest, although I appreciated his effort and sincerity to help.

    I'd take major issue with their claim that patients are often capable of diagnosing better than doctors - particularly when it comes to rare diseases. If my year of amateur 'med research online has taught me (attempting to self diagnose), it's that medicine is painfully vague and complicated and doctors really are in the best position to pair our symptoms and lab results and try arrive at a possible diagnosis. They also have the benefit of having studied years of the underlying anatomy and biochemistry in a detail that (generally) none of us have.

    Although we may often be able to glean useful information from the internet to work with them, I wouldn't place the diagnostic process in anyone else's hands other than someone who has gone through the proper training.

    If there were a way to guarantee that it was limited to real medical professionals and employed a fixed fee model I'd happily give it another chance, but as it stands at the moment I'm not sure I see the merit in it.
     
    Last edited: Nov 18, 2014
  3. Michael_venice

    Michael_venice

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    Dan, I feel the same as you about it. I did offer a modest reward, but most people seemed to have just put a few of the first few symptoms into Google, and then put that in as their 'guess'. I also had many guesses that were things I had written had been definitively ruled out.
     
    dan062 likes this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    I am assuming that people go to this site when they fail to get a diagnosis from medical practitioners, in which case I am surprised that so many cases of multiple sclerosis, lupus, and rheumatoid arthritis are being missed.
     
  5. dan062

    dan062 Senior Member

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    @Little Bluestem That in itself is highly suspicious.

    If a neurologist(s) has failed to diagnose MS after presumably doing a comprehensive neurological physical exam and studying the imaging, how is a medical student / nurse (according to CrowdMed, their top two diagnosticians) going to diagnose MS without the benefit of either?

    Same thing for lupus or RA? Presumably, a rheumatologist will have also gone through all the labs, done the physical, and ruled both those relatively common conditions out.

    Anyone could technically diagnose any of us with MS/lupus/RA based on our symptoms alone and given the fact that a tiny proportion of cases will not show any lesions on MRI / normal ANA, etc. But is that really 'diagnosis'?
     
  6. Valentijn

    Valentijn The Diabolic Logic

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    Neurologists manage this stunning feat by refusing to examine the patients referred to them, and ignoring everything the patient says. A CFS diagnosis for the patient seems to greatly aid neurologists' ability to ignore patients, and the female gender is also likely a factor.

    I still haven't had MS excluded.
     
  7. dan062

    dan062 Senior Member

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    Lol.

    I guess you could say I'm in the same position. I was offered a lumbar puncture and declined. Particularly as when the autoantibodies showed up I reckoned it was probably something systemic.

    I'm just saying that with most MS cases presenting in a relatively typical fashion (a sudden onset of optic neuritis, hemiparesis, etc), and the vast majority of them having visible brain lesions, what's the point in spending money and time chasing down an unlikely possibility? Particularly as the treatment doesn't seem to make a vast amount of difference anyway.
     
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    Doesn't the crowdmed site require any kind of verification of the diagnosis - a doctor who will diagnose or response to treatment?
     
    Valentijn likes this.
  9. Valentijn

    Valentijn The Diabolic Logic

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    What, like a history of having a 3-week "hemiplegic migraine" 4-5 years before ME onset? :rolleyes:

    The neurologist literally would not examine me at all, beyond ascertaining if I could exert some force with various limbs. No scan for lesions.
     
  10. A.B.

    A.B. Senior Member

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    I put in my details without reward to see what would happen, and only got one totally random suggestion. Waste of time. Perhaps offering a reward would result in useful suggestions but I find the business model a bit shady.
     
  11. dan062

    dan062 Senior Member

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    Nope.

    You get a PDF export of your case-file and it's up to you to take things from there.

    It would be a good idea if they had some kind of a network of partner doctors who would accept this and offer treatment if the suggestions fell within their speciality, but then again, what kind of doctor is going to take a list of suggested diagnoses from non-medical people seriously?
     
    Little Bluestem likes this.
  12. dan062

    dan062 Senior Member

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    AFAIK, migraines aren't the typical presenting feature of MS.

    I don't have a statistic, but I think optic neuritis closely followed or accompanied by some kind of focal neurological deficit, such as foot drop, is the classic presentation. Migraines, even atypical ones, can be a primary neuro disease (and produce brain lesions).

    Sorry. I was assuming that you had had this. Seems strange given that you were experiencing the lasting migraines.
     
  13. Valentijn

    Valentijn The Diabolic Logic

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    It wasn't necessarily a migraine. That's what it was called after ruling out everything else. It also wasn't properly hemiplegic, it was milder than that, as is hemiparesis.

    I was scanned for lesions when I developed the hemiparesis 5 years before ME symptoms began. But never during the process of diagnosing ME.
     

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