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