HealClick

Thirty-year-old Joey Tuan can pinpoint the exact moment he got sick in 2005.  It was mile three of a 17-mile hike at Half Dome in Yosemite. Before he reached that pivotal instant that would change his life, he says he was in the best shape of his life—and having the time of his life. “I was an adrenalin junkie, a classic type A pusher, working 60 hour weeks as a dispute investigations consultant in San Francisco, going to the gym four times a week, studying for the Chartered Financial Analyst exam, and I’d just graduated from Berkeley,” Tuan recalls.  “I jumped at any opportunity to try new restaurants and hang out at bars with friends. The word ‘stop’ wasn’t in my vocabulary.”           

 

Until mile three, that is.  Tuan struggled through 14 more miles and returned from his hike sporting a high fever.  He was soon diagnosed with mononucleosis and then made the mistake of going back to work after only three weeks.  He was nowhere near recovered when he jumped at the opportunity to go to Shanghai for a business trip. After two weeks in China, he developed a throat infection. Upon returning home, he couldn’t drag himself to work. Instead, he quit his job and moved back home in Los Angeles, spending the next six months bedridden, cared for by his parents.

It would take 10 months for Tuan to get a diagnosis of myalgic encephalomyelitis (ME), formerly known by the trifling name chronic fatigue syndrome that doesn’t begin to describe the level of disability that the disease causes. He learned about ME not from his family doctor but through an online forum that described his symptoms perfectly and listed ME-literate physicians.  One nearby diagnosed Tuan. “Until that point, top infectious disease specialists at UCLA kept saying, ‘It’s just mono,’ ” Tuan says.

Being Invisible

The diagnosis was only the beginning of his journey. Tuan’s spent more than $200,000 on medications, supplements and alternative treatments trying to get well. But year after year, nothing really helped. No matter how much he slept, he didn’t feel rested. His mother prepared his meals because he couldn’t stand up to cook.  “I’d go on my computer, read forums and research for 30 minutes until my head started throbbing, and I had to stop,” he says.  “At night I’d take a bath because I couldn’t stand up for a hot shower, and then I’d take sleeping pills to force sleep.  I was basically living but not alive.”

But the worst part wasn’t the illness: It was being invisible and not being believed.  “Because I looked mostly healthy on the outside, friends, some family members, even doctors assumed I was either lazy, or that my illness was psychological,” he explains. “It’s not uncommon to hear patients say they’d rather have cancer so that others will believe they’re sick.”  

Tuan was lucky enough to have supportive parents. But even they didn’t know the full extent of his illness. “When we traveled together to Germany in 2009 for treatment, I had to ask for a wheelchair at the airport.  That’s when my mom realized how disabled I really was and broke down in tears,” he says. After six years with ME, what finally turned things around for Tuan was experimenting with living in a toxin-free environment in the desert outside Las Vegas.  It had helped a fellow patient he met on the online patient-support boards, and Tuan thought it was worth a shot. 

Match Patients

With his health significantly improved, he now wants to help other patients avoid the painful years he spent trying to find a way out of his illness. “What was so frustrating for me was when a patient would say treatment X was helpful, I had no idea if they had what I had,” Tuan says.  “Were our symptoms, lab work and genetics the same?  ME is such a poorly understood disease, and some patients work full time while others are bedridden. Some respond amazingly to antivirals, whereas others get worse. Sharing information with each other was as potentially risky as it was potentially helpful, because we’re such a mixed bag.”

Necessity, for Tuan, became the mother of invention, and he started a free online group, HealClick (www.healclick.com) to help patients.  “For treatment reviews to help ME and other poorly understood conditions, we match patients up based on their entire condition,” he says. His first challenge was to see if patients would even use another social network other than Facebook, so he started out building one just for young adults with ME, fibromyalgia and Lyme disease.

  

Patients flocked to the site, so Tuan and his partners decided to go for it and build a platform that would cater to autoimmune patients of all ages. They began building a social platform in 2013 and in July launched their alpha with a content feed that could be filtered by specific diagnoses. In December, they launched their beta personalizing content automatically to the patient’s entire condition. In addition to ME, fibromyalgia and Lyme disease, HealClick is geared to patients with poorly understood, frequently overlapping autoimmune conditions, including lupus and arthritis.  The site aims to be a warm and social place—not unlike Facebook.

Patient-driven Revolution

Content caters not only to a patient’s condition but also to symptom severity, treatment responses and, soon, lab work. More importantly, data on HealClick goes right into a de-identified database for medical research, according to HIPAA guidelines, which Tuan will share with researchers and companies with a track record of helping patients. “Patients identities will always be protected,” Tuan maintains.  (To read HealClick’s privacy policy, click here.)

Tuan’s goal is to create a patient-driven revolution of personalized health information and research data.  “If we can get enough users and keep advancing our patient-matching algorithm, we can start correlating co-conditions, symptoms, treatments and labs for patients to discuss with their doctors,” Tuan says. “We hold a power in numbers that could be game-changing. If we can arm ourselves with a database that truly captures our health over time, we can then present ME and other diseases as diseases worth solving.”

HealClick has launched an Indigogo fundraising effort.  If you’d like to contribute, click here: www.indiegogo.com/projects/revolutionizing-patient-sharing.  To sign up for HealClick, click here.

CFSAC Nomination: Jeannette Burmeister

Wouldn't it be great to have patient advocate Jeannette Burmeister on the Chronic Fatigue Syndrome Advisory Committee?  On her blog, she's been a fierce advocate and takes no prisoners when it comes to the government's mishandling of ME.  She's been nominated already by patient advocates John Herd and Eileen Holderman. Holderman fought the good fight on CFSAC; her tenure expires in the spring. 

Now patients could certainly use another strong patient advocate.  If you'd like to shower Burmeister with the support she's earned, email CFSAC@HHS.gov and tell the agency.

New ME Film: Canary in a Coal Mine

Jennifer Brea and Kiran Chitanvis have just launched their Kickstarter campaign to raise $50,000 to make Canary in a Coal Mine, their documentary about ME. Brea, a journalist, came down with ME three years ago. An interview with Brea will follow shortly on this blog. You can share their campaign with others and view two terrific clips from their film here. When you click to get to the film clips, you'll see where you can donate to Kickstarter. 

CDC's Two-Day Exercise Test: Not Negotiable

Center for Disease Control's head of CFS research Dr. Beth Unger is slated to do a problematic one-day ME exercise study called the Cardiopulmonary-Exercise Testing, instead of the two-day test favored by most patients and ME-educated researchers. What’s wrong with Unger's study? 

The problem is that studies show that defects in ME patients' exercise capacity aren't evident until the second day of testing. With one-day testing, ME patients resemble deconditioned controls, a fancy phrase for couch potatoes. 

In a letter discussing her reasons for favoring the one-day study, Unger says two days would be an “unnecessary burden” for patients. Would most patients prefer a difficult one-day study that makes ME sufferers out to be indolent grumblers or a grueling two-day study that shows just how sick ME patients are? Do I really have to answer that question? Besides, the very sick patients who can't handle the second-day exercise test provide helpful data for researchers. The fact that they can't do a second day would become part of the study's findings.

Could Unger just not know about second-day crashing in ME patients?  Dr. Chris Snell, an expert in the field of exercise testing for ME patients and a proponent of two-day testing, served as president of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). Unger attends its meetings, so she's aware of his work.

In citing other reasons for her decision to go ahead with one-day testing, Unger said more patients could be tested in a one-day study. To which I say: Quality, Dr. Unger. Not quantity. 

Exercise Not Negotiable 

When the one-day study shows most ME patient to be just deconditioned—not sick—the phony prescription will be, of course, exercise. Patient advocate Mary Schweitzer, in a terrific post on Unger's proposed study, calls it a set-up; I call it rigged.  

Unger believes in graded exercise for ME patients the way Republicans believe in the late Ronald Reagan. In fact, Mary Schweitzer makes this trenchant point about Unger:  

"The only time I ever saw Dr. Unger get angry in a CFSAC meeting was when we were all calling for a change in the CDC's recommendation of graded exercise. We asked not only that they quit recommending it, but also that they openly WARN physicians about the dangers. She was furious. She said that the emphasis on graded exercise was supported by scientists and was 'not negotiable.' Those very words. 'Not negotiable.' "

Patients need a CDC researcher who understands how dangerous exercise can be. How does Beth Unger get off telling patients that she knows best, that graded exercise is good for them, when it's the patients—not she—who understand this disease, who've been suffering for years if not decades? 

Patient advocate Cort Johnson has also written an in-depth piece arguing for a two-day exercise study. He points out that instead of enlisting the experts in the field to conduct the study—Snell and Stevens—CDC is calling upon Connie Sol, who, he writes, has done only one study.

Chris Snell's Studies

The way I see it, it's clear to most patients, advocates and ME-educated researchers that a two-day exercise test is necessary. In a letter, Unger explained that she had consulted Snell on which he thought was the better approach—one-day or two-day exercise testing. Snell said two-day testing. 

When asked to comment on Unger's proposed study, Snell wrote in an email to CFS Central: "Unfortunately I do not feel able to comment on the proposed CDC study at this point. I am not involved in the study and do not know much about the design, measures, or any hypotheses they intend to test. My views on exercise testing for ME/CFS are well-documented, including a number of presentations available on the WWW. The most recent is the FDA ME/CFS drug development workshop earlier this year. Please feel free to cite any of our work or public comments."

Snell and Steven's most recent study, published in June, found that two-day testing is vital in ME patients, with emphasis added:

"The objectives for this study was to determine the discriminative validity of objective measurements obtained during CPET to distinguish individuals with CFS from non-disabled sedentary individuals. Methods Gas exchange data, workloads and related physiological parameters were compared between 51 individuals with CFS and 10 control subjects, all females, for two maximal exercise tests separated by 24 hours.  Results  Multivariate analysis showed no significant differences between controls and CFS for Test 1.  However, for Test 2 the individuals with CFS achieved significantly lower values for oxygen consumption and workload at peak exercise and at the ventilatory/anaerobic threshold. Follow-up classification analysis differentiated between groups with an overall accuracy of 95.1%. Conclusions The lack of any significant differences between groups for the first exercise test would appear to support a deconditioning hypothesis for CFS symptoms. However, results from the second test indicate the presence of a CFS related post-exertional fatigue. It might be concluded that a single exercise test is insufficient to reliably demonstrate functional impairment in individuals with CFS. A second test may be necessary to document the atypical recovery response and protracted fatigue possibly unique to CFS, which can severely limit productivity in the home and workplace."

In other words, according to Snell's study, it takes two days of testing to see the poor recovery response—post-exertional malaise—in patients. 

Tom Hennessy

On another note, Tom Hennessy, a ME patient I’ve know for 19 years who lived with debilitating pain, committed suicide on September 9th. If Beth Unger, CDC and HHS spent more time doing legitimate research, perhaps patients like Tom wouldn’t feel the need to end their lives.  

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