Friday, January 17, 2014


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 ( 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:  To sign up for HealClick, click here.

Thursday, October 31, 2013

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 and tell the agency.

Tuesday, October 22, 2013

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. 

Saturday, October 12, 2013

Don't Let Petition Fatigue Set In:
Contact Congress to Stop the IOM Contract and Adopt CCC

Patient advocates, including Mary Dimmock and Patricia Carter, sent this call to petition Congress to stop the IOM contract and adopt the Canadian Consensus Criteria. Patients no doubt are experiencing petition fatigue, but the signatures of 34 key ME researchers and clinicians on the petition to HHS Secretary Kathleen Sebelius to stop the IOM contract have been one of the most important advocacy moves of the past 30 years. Congress, unlike HHS and CDC, is much more likely to listen to the patients and these experts--and that's why advocates have drafted this petition to Congress.

Given the situation, despair is understandable, but despair won't change anything. This is usually the time that patients fold and let the government have its way--and patients get shafted yet again. This is usually the time when patients say maybe it will be different this time and try to work within the system, but so far that hasn't worked. This is usually the time when patients let the CFIDS Association, HHS, CDC and their minions say soothing things--but walk all over them. But this time can and should be different: This time patients have 34 experts supporting their cause, and that should make Congress take notice.

Here's step-by-step directions to contact Congress:

For U.S. residents only
Please contact your congressional leaders as soon as possible within the next two weeks and ask them to tell HHS to adopt the CCC and cancel the IOM contract. Please ask your family and network to do the same.

Instructions and a sample letter are below. Note that while the government is still shutdown, the web contact forms still work and the messages from constituents will be recorded. Sending in messages now will ensure that they are logged and available for staff members.

For U.S. and international members of the community
If you have not done so, please sign the two attached petitions calling on HHS to adopt the CCC and cancel the IOM contract. Ask your family and friends to do the same.

1. October 7, 2013 petition calling on HHS to stop the HHS/IOM contract and accept the CCC definition.

2. June 2013 petition calling on HHS to adopt the CCC and stop using the name ‘chronic fatigue

General background can be found here. Additional facts about the HHS/IOM contract for ME/CFS can be found here.

Instructions to email or call your congressional leader (U.S. only) 
1. Senators and members of the House of Representatives need to hear directly from their constituents. You can get the contact information for your congressional leaders at this website.

Type your zip code into the form and click on “Submit It.” The website will return the names of your two senators and one representative along with their phone numbers and a link to their contact form.

2. Click on the link to the web contact form for your senators and representative. This will bring up the web contact form for that legislative leader.

a. If you are using the sample letter, copy it into the box provided for your message.

b. Use “Stop the IOM Contract to Redefine ME/CFS" as the subject.

c. If the online form indicates that you need to choose the nature of the issue, select a choice dealing with healthcare.                                             

Sample message 
To be copied into the web contact form:

I am asking you to contact the Department of Health & Human Service (HHS) today and tell them to follow the lead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) disease experts. Tell HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.

On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to Health and Human Services Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

Regarding the IOM contract, the thirty-five experts stated,“[S]ince the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-$23 billion dollars a year in lost productivity and direct medical costs.

Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to contact HHS today and tell them to follow the lead of ME/CFS disease experts. Tell HHS to cancel the contract with IOM. Tell HHS to adopt the Canadian Consensus Criteria.

For more information, see the following links or send an email to
– Link to Sept 23 announcement from HHS on the IOM contract.
– Link to Sept 23 letter to Secretary Sebelius from the 35 ME/CFS experts.
– Link to additional background.