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Beating M.E.: Joey Tuan's Illness Becomes Engine For Change

By HERWriter
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Joey Tuan's Illness Becomes Engine For Change to Beat M.E. Photo Courtesy of Joey Tuan

Joey Tuan was an adrenaline junkie, working 60 hours a week as a consultant in San Fransisco. He went to the gym four times a week, and studied for the Chartered Financial Analyst exam in the evenings.

He was in a committed relationship, and jumped at any opportunity to go to new bars and restaurants with his friends.

All that changed when he was 23, the day he became ill with myalgic encephalomyelitis, or M.E. (formerly known as chronic fatigue syndrome).

He was in the third mile of a 17-mile hike at Half Dome in Yosemite National Park in California, and found himself feeling "like death warmed over". When he got home he had a "high fever from hell" and was incapacitated in bed for two weeks.

When he went to the ER, he was diagnosed with mononucleosis. Weeks went by and he was still bedridden. He had to move back in with his parents in Los Angeles, bedridden and needing help with everything, including eating, for the following six months.

It took 10 months to be diagnosed with M.E. He'd never heard of this condition, learning about it on an online forum. He was fortunate to find mention of a good doctor in his area.

Tuan was incapacitated for six years, spending more than $200,000 on treatments. In a typical day, he would sleep anywhere from six to twelve hours at a stretch, but never woke feeling rested. His mother took care of his meals because he was unable to stand up to cook.

He was able to spend half an hour on the computer researching for his condition, then his head was throbbing too much and he'd have to stop. The rest of his time was spent meditating, driving around, and watching TV which he never used to do.

He had a bath at night since he couldn't stand up in the shower. He'd take benzodiazapines to put him to sleep, ending a day where "I was basically living but not alive."

His social life and his efforts researching his illness, were online in patients' forums. Though he learned a lot about other peoples' symptoms, he didn't know if he was dealing with the same things or whether their treatments would work for him.

This was because for a poorly-understood illness, there is such wide variety in symptoms and severity, some patients are bedridden while others are able to work while managing symptoms.

In an email interview Tuan said, "For years I dreamt of a Yelp for Medical Treatments, and my frustration with patient-sharing showed me why it doesn’t exist: Patient-sharing for chronic conditions doesn’t work like it does for colds.

"When a patient has a cold and reports cold-eeze helps, everyone can go buy a product recommended by another patient. When a patient with M.E. says something helps, this patient often has different symptoms, labs, and co-conditions from me even though we share a primary diagnosis. Treatment reviews need to be personalized each patient’s medical details in order to make sense for M.E. and other poorly-understood conditions."

This vision became HealClick. Tuan said, "We match patients with similar conditions to make sharing treatment experiences easier, then use all this online data to fuel new medical research."

How do people use HealClick? They can share their condition, rate their symptoms, and rate their treatments. After they're done, their medical condition is compared to every other patient on HealClick to determine match percentages between each of them.

Now they automatically see topics and treatment reviews for their conditions (whether they have one or five), and they can go a step further and see content from their highest patient matches.

Tuan said, "I'm trying to build a business model that empowers patients for the knowledge, support, and experiences they bring, without ever having to leave their homes. I feel strongly that too many websites have had patients contribute time and energy for free because they have no competitive income source."

He knows all too well the difficulties faced by patients with M.E. who are trying to regain their health.

"For patients, there’s too much at stake. Patient-matching has to be done so patients can save time, energy, and money. What we share online needs to fuel new research. For me, I’m not recovered. I can’t have a real social life or have my own family and work at the same time. Because of my limitations, I have to pick one and go all the way, boom or bust. It may sound cheesy as hell, but seeing HealClick make patients’ lives better actually gives me energy and makes it a lot easier to give all of my time and resources to this endeavor. "

For more information:

Sign Up. Healclick.com.

Help Start A Patient Revolution. Indiegogo.com.

FAQs. blog.healclick.com.

Interview with Rachael Korinek. WEAU.com.


Email interview with Joey Tuan, January 8, 2014

Visit Jody's website at http://www.ncubator.ca

Reviewed January 14, 2014
by Michele Blacksberg RN

Add a Comment8 Comments

EmpowHER Guest

Hi Jody,

Thank you for this article. Joey (and you) are amazing people.

I just wanted to mention that the link to the FAQ's on Healclick doesn't work. I think it's missing the first part of the URL?


January 15, 2014 - 2:29pm
HERWriter (reply to Anonymous)

Hi Rich

I appreciate the encouragement. 

Thanks for pointing out the dead link. Should be working now.


January 15, 2014 - 7:21pm
EmpowHER Guest

Thanks Jody for writing about my story and throwing in a mention of HealClick :) This is the one I really want to share with family and friends to show them what life as a patient w/invisible illness is like.

And thanks for everyone else for your support.

January 15, 2014 - 10:27am
HERWriter (reply to Anonymous)

Glad to do it Joey. You've been sick for so long, the fact that you are recovering is great -- and an encouragement for others who are still really sick and are afraid to hope for a better life. People need to hear about such positive things. And people need to be reminded that there are people who are so incapacitated as you and I have both been in the past. Trying to make an invisible illness a little less invisible.

HealClick could turn out to be really beneficial for the M.E. community, I'm glad to be able to get some information out there. That you and your team have been able to put this together while dealing with the challenges of your own bad health is remarkable and noteworthy. 

I know that your main goal is the care and nurture of fellow patients. You have been there and know just how bad it can be -- and that's pretty darned bad. That suffering creates the heart of a champion in someone who is open and willing. In this case, that would be you.:)


January 15, 2014 - 1:20pm
EmpowHER Guest

Thanks for the update from a fellow sufferer of ME from uk
Good luck in all you do to beat this debilitating illness

January 15, 2014 - 8:32am
HERWriter (reply to Anonymous)

Good luck to you, Gary. I hope you are able to recover from M.E.

Thanks for writing.


January 15, 2014 - 10:09am
EmpowHER Guest

Thanks, Jody! I've been mostly off the forums you mention here. Did not know about HealClick. I'm so glad Joey found a way to put meaning in his life. And I'm grateful for all your articles!

Kelly Connor

January 14, 2014 - 11:11am
HERWriter (reply to Anonymous)

Hi Kelly

Always happy to bring people up to speed on things, keep you in the know. :)

Thanks for the encouragement.


January 14, 2014 - 11:15am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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