Interview with Dr. Ian Lipkin

I had a candid conversation with Dr. Ian Lipkin this week in which he discussed his ME research, the government’s thinking when it comes to ME and how to get more research funding dollars from the government.  I'm working on a story, which will be published here soon. 

IOM Testimony

Below is my testimony from yesterday's conference at the Institute of Medicine.  To watch it, click here.

My name is Mindy Kitei, and I’m a journalist.  I’ve been reporting on myalgic encephalomyelitis for more than twenty years and started my blog, CFS Central, in honor of my friend Nancy Kaiser, who died of the disease in 2008.

Fifty of the finest ME experts believe that the IOM lacks ME expertise and that the government should adopt the Canadian Consensus Criteria definition immediately. 

Patients believe that the IOM will devise a name worse than chronic fatigue syndrome, something like “chronic multi-symptom illness,” the meaningless moniker the government and IOM use for Gulf War Syndrome.  On the IOM website, a curious diagram that accompanies an article by Dr. Daniel Clauw, lists several diseases:  Gulf War Syndrome, fibromyalgia and CFS, among them, all covered under the big umbrella of somatoform disorders, psychiatric ailments that just look like physical diseases.

Tell that to Nancy Kaiser, who experienced multiple seizures a day.  Tell that to Jerry Crum and Leanne Hyneman, both of whom I interviewed in 1994 and have since died from ME.  Jerry was in his fifties; Leanne, in her early forties.

Patients believe that the IOM committee will lump real ME patients with the flawed cohort that CDC studies. Dr. Leonard Jason, the premier expert on ME definitions, published that CDC’s cohorts have depression, not ME.  Imagine studying HIV—but looking at patients who suffer only from depression, not HIV.  It’s insanity.

Not only does CDC study the wrong patients, it conducts the wrong studies. Take its new exercise study.  The hallmark of ME is post-exertional collapse. 

But Dr. Chris Snell published that exercise-capacity deficits in ME aren't really evident until day two of testing.  The first day patients resemble deconditioned controls.

So what is CDC doing?  A one-day test.  Why does CDC want patients to look like couch potatoes?  So that the government can write off the ME epidemic of seventeen million souls worldwide, one million in the U.S., the same number with HIV/AIDS.  

The best predictor of future behavior is past behavior.  In the IOM’s book Gulf War and Health, the IOM Gulf War committee writes about CFS—since the symptoms resemble Gulf War—and recommends graded exercise for CFS, which can lead to crashes that last months, even years.  Graded exercise is also recommended by CDC and psychiatrists like Simon Wessely—both of whose work the IOM Gulf War committee endorsed.

Given its clear bias, the IOM must recuse itself.  And the government should adopt the Canadian Consensus Criteria and spend that $1 million for real research.  Thank you.

  

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.