SPOKANE, Wash. - It's more common than MS, it's incredibly debilitating, and you've probably never heard of it.
It's called ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
It's strikes down busy, successful people like Kelsey Glynn.
Kelsey was born and raised in Spokane, graduated from Whitworth University and went on to secure a highly-coveted position at Nike in Portland. Just after graduating college, she started to notice something was wrong.
"I started having stomach problems and it was just like kind of annoying, but then it like gradually got worse, so I had to cut back on activities. After about a year of that, I was diagnosed with Celiac [disease]," Kelsey said.
She was grateful to have found an answer and cut out gluten completely, but she only got worse. It took more than a year and around 30 different doctors before she finally heard about ME/CFS.
"I was reading about it, and it was like, the boogeyman for me. I was like, just anything but that, please let me have anything but that," Kelsey said.
There's no treatment or cure for ME/CFS, and it's incredibly debilitating. She lived in Portland with her fiancé, but recently moved home with her parents for a little while so she could have full-time care.
"I'm in bed all the time and I can make it out of bed to like go to the bathroom, but often I have to crawl on the floor because my body doesn't do well when I stand," Kelsey said. "I can't watch any movies or new TV, I can only watch like things I've seen so many times that it's not hard on my brain, and I can't listen to audio books, so I spend a lot of time intense-resting or hibernating, which is where I just try to like wind my body down enough with deep breathing and meditation that I'm not quite asleep but I'm not quite awake either."
It's difficult to find doctors who are well-versed in ME/CFS, so Kelsey sought treatment from the Bateman Horne Center in Utah. They specialize ME/CFS and Fibromyalgia. Kelsey qualifies for a study the center is doing on patients with early onset ME/CFS. If she couldn't participate in that study, she thinks it would be much more difficult to receive care.
"There aren't enough specialists to meet the need," Dr. Lucinda Bateman said. "Most centers like mine and other centers throughout the country are just flooded and backed up and unable to fit people in because the demand is much higher than our capacity."
Not only is it difficult to receive care, many patients wait years or even decades for a diagnosis.
"In the 90s, research showed that only about 15 percent of people with the disease had ever been diagnosed with it," Dr. Bateman said. "It's probably changed over time, but I'm sure, by far the majority of people with this illness don't get the right diagnosis."
Dr. Bateman said that the correct diagnosis for ME/CFS makes a big difference. If patients know what they have, they know how to make progress.
Initially, ME/CFS was known only by the name, "Chronic Fatigue Syndrome". Dr. Bateman thinks this might be one of the reason why the disease isn't well-known or well-studied.
"It kind of got lost in the sea of chronic fatigue and because we didn't have these clear objective markers some time ago, it got overlooked," Dr. Batman said.
She also points out that while the disease is very real, it can sometimes be difficult to communicate.
"It's hard to explain fatigue, it's hard to explain cognitive symptoms, it's hard to explain why you can't stand up," Dr. Bateman said. "Lots of times the patient that's afflicted by the disease doesn't even know what's happening to their bodies except that they feel sicker and sicker."
A support system is crucial for ME/CFS patients, but not everyone is so fortunate. Patients without the means to seek medical care and without a support system will often fade into the distance.
"It sort of becomes an invisible disease, because the more ill people are, the harder it is for them to get to medical care," Dr. Bateman said. "Some of the most ill people, especially those who don't have a supportive family around them, or you know good insurance, or good access to primary care, they just get more and more isolated and more and more ill at home. It's a big concern."
Kelsey is lucky to have that support system, and is starting to make progress, slowly but surely.
"I'm feeling kind of hopeful, because the fact that I've made any progress at all is a really big deal, that means I'm probably capable of making more progress," Kelsey said. "I have really good chance of being able to do more and not being bedridden in the future, it's just going to be a trek getting there."
With help from a therapist specializing in chronic illness, she's able to start coming to terms with her new normal.
"I'm finding ways to be at peace with it and still find beauty in my new life, so it really could be worse. You really have to like accept yourself in a really radical way to get through it and there's a kind of peace that I know now that I never kind of new about," Kelsey said.
As she continues to make progress, she hopes to one day be able to watch new movies, make it out of the house more often, move back in with her fiancé, and eventually, travel.
"I would love to be able to like survive a flight, so I could like do little bits of travel at a slower pace," Kelsey said.
ME/CFS affects up to 2.5 million Americans. According to the CDC, 90% of people have not been diagnosed. For more information about the illness, click HERE.