Image: Would you trust a stranger to diagnose you? (iStock).
Online health information is often wildly inaccurate and not corroborated by science, and so we’re constantly urged to take medical questions to experts who are actually trained in the field rather than relying on the internet.
However, it seems those two worlds are now colliding: there’s a website is claiming to have helped hundreds of sick men and women solve medical mysteries that have left ‘real world’ health professionals stumped.
It’s called CrowdMed, and it allows patients to crowdsource diagnoses and possible treatments from a community of ‘medical detectives’ that includes health experts, academics, and even fellow patients. And, according to the website, more than half of these patients have reported positive results.
A 31-year-old wedding photographer named Hope decided to submit her case to CrowdMed after suffering from strange, debilitating symptoms that doctors continually dismissed as anxiety or migraines.
In a fascinating episode of the Reply All podcast, Hope recalled it all began when she experienced a pressure in her right eye that almost felt like it was bulging out of her face. A doctor told her everything was perfectly normal, and the sensation disappeared after a month.
Ordinarily this was the kind of occurrence she'd consider a passing oddity, yet more symptoms popped up. One day, Hope was convinced she'd had a stroke because she noticed a "weird zigzag" in the vision of her right eye. Soon she was getting constant, increasingly painful headaches— "I actually believe that the pain was giving me panic attacks", she recalls — along with dizzy spells, extreme fatigue, facial numbness, and a 'fluttering' in her ears that she likened to a butterfly flapping its wings.
Several times, doctors sent Hope home with migraine medication, and subsequent appointments with neurologists and headache specialists produced no concrete answers.
"There came a point where I was so frustrated, I was like, 'I don’t want to hear that it’s migraines. Most people do not have a migraine for four months straight with twitching and ringing in the ear'," she recalls.
She had to beg for an MRI, and at one point questioned whether the pain she was experiencing was a physical manifestation of grief; three years earlier, she had lost her husband to suicide.
"I think people were thinking ... 'She finally cracked'. Or that like, you know, 'Her husband passed away a few years ago and maybe now she’s having this breakdown'," Hope says.
Eventually, however, she became so unwell she couldn't work. Having spent thousands of dollars on specialist appointments, her attention turned to the internet. While reading a New York Times health column by Dr Lisa Sanders, Hope spotted the word CrowdMed in the comments section.
After investigating the site's legitimacy, Hope decided to go for it. She selected the $500 'standard package' and submitted a detailed timeline of her symptoms, medical tests and results.
CrowdMed, which launched in 2013, subscribes to the notion that a large group can be smarter than an individual or expert "as long as the collective wisdom is adequately captured, aggregated and analysed". The site claims its format empowers that group to diagnose medial issues "faster and more accurately".
The many 'detectives' who took interest in Hope's case came up with a number of suggestions. One health researcher had an inkling that her symptoms were linked to a cardiovascular issue or "stroke-related illness". Others speculated on a cerebral spinal fluid leak or leaky gut syndrome.
Hope quickly noticed the answers were gravitating towards a specific part of her body: her neck. Though she wasn't experiencing any neck pain, and she'd had a neck ultrasound that produced no unusual results, she recalled an incident in a restaurant months earlier.
"I remember at one point turning my head sharply, to look at something in the restaurant and almost feeling like I was going to black out ... Like, my vision went dark for a second ... At the time, I was carrying a camera around my neck with a neckstrap all the time," she told Reply All reporter Sruthi Pinnamaneni. Considering professional cameras can weigh more than 10kg, neck trouble didn't seem implausible. (Post continues after gallery.)
One CrowdMed user suggested Hope had strained her sternocleidomastoid muscles (SCM) — which connect the sternum and clavicle and assist in the turning of the neck — and sent her a chiropractic case study about a condition called SCM Syndrome. The symptoms include dizziness, facial numbness and headaches.
Following this lead, Hope made an appointment with a physiotherapist who assigned her some neck exercises — and she was overjoyed when the pain in her head subsided for the first time in months.
"I just couldn't believe it ... [Until then] I had no life at all. I remember ringing in the New Year literally laying flat on my back trying to watch Law and Order SVU through a reflection because I couldn't sit up to watch the TV because I had such a bad headache. I felt so utterly alone," she said.
Then, she began seeing a chiropractor once a week, and after a few months her other symptoms slowly dissipated. Now, she feels great, and hasn't experienced a symptom since August.
This sounds like a CrowdMed success story. However, when Pinnamaneni conducted some additional research into how the sternocleidomastoid muscles could affected so many different aspects of Hope's health, the legitimacy of the diagnosis became murky.
Pinnamaneni contacted Dr Sanders from the New York Times and explained Hope's case, her symptoms, and the CrowdMed verdict. Sanders' response was telling: "I think this is the wrong diagnosis." (Post continues after video.)
In fact, she believes Hope's case is far more serious, and suspects her symptoms are a result of carotid dissection — a condition that could "shoot little clots into her brain" and potentially cause a stroke. Although Hope's symptoms have decreased, this doesn't necessarily mean she's been 'cured'.
Interestingly, the case report CrowdMed issued Hope included a list of recommendations for action she should take. One of those recommendations was for Hope to undergo an MRA scan — the same test Dr Sanders urged her to have. However, this was buried among other suggestions like "trigger point massage therapy" and "chair yoga to improve balance".
Therein lies a major issue with the CrowdMed model. The website told Reply All that while sometimes the "good answers" don't appear as high up in the report as they should be, for the best part "the best answers rise to the top".
Is that really a gamble patients are prepared to take?
Dr Sanders argues that even in the medical world, there are no certainties, only possibilities. "The possibility of something terrible happening to somebody because we didn’t think of something is… is the stuff of my nightmares. All doctors’ nightmares. The odds are you don’t have a carotid dissection, but do I feel confident enough to bet your life on it? No," she told Hope.
What do you think of CrowdMed? Have you ever used it?
You can listen to the ReplyAll podcast in full here.