A rare disease left Mia Anderson bedridden, and now she’s fighting back.
It wasn’t long ago when Mia Anderson found a new friend for a reason they both wish they didn’t have. It’s what made her and Jennifer Brea go from active college students to bedridden and, at times, unable to speak.
The scientific name is myalgic encephalomyelitis. That was Mia’s diagnosis in 2015. It causes extreme fatigue, pain, headaches, sleep abnormalities, dizziness, mental confusion, memory loss and other symptoms. It can leave a patient in bed for months, and doctors still don’t know how it’s contracted.
“It’s not a life,” Mia said. “It’s a suspended animation.”
To understand Mia’s symptoms, ask her mother. Nancy had the disease first.
“It’s very strongly hereditary, mostly with mothers and daughters,” she said.
For Nancy, the symptoms first came after she had triplets. Brenner, Emily and Mia were all born healthy kids. But after her pregnancy, Nancy slowly started feeling like something was wrong. The exhaustion wouldn’t go away. Diagnosed with a thyroid condition and trying to manage extra symptoms that baffled doctors, she just dealt with it.
“Every time I went to my doctor, they said it must be my thyroid,” Nancy said. “It was much more than that.”
If the disease shortened to ME doesn’t sound familiar, there’s a reason. An estimated up to 2.5 million Americans suffer from what’s more commonly known as Chronic Fatigue Syndrome.
It’s a disease that has seen mockery on the Internet, with memes about “Maybe I have chronic fatigue” making light of ordinary people having a bad night’s sleep. It’s stigmatized in the medical community too, said Mia’s father, Dr. Mark Anderson, an anesthesiologist.
“Physicians like definites,” he said. “This is more subtle, more vague. I understand why the medical community hasn’t grasped it. There’s no rigid criteria. There’s no clear cut gold standard for diagnosis. If you have strep throat, you get a positive strep culture. If you have cancer, you get a positive biopsy.”
With ME/CFS, there’s none of that.
“Currently, we don’t have a single way to determine that somebody has CFS in an objective way,” said Dr. Jose Montoya, a Stanford University medical researcher, at a recent symposium on ME/CFS.
That uncertainty could be worse. In 1934, 198 doctors, nurses and staff at Los Angeles County General Hospital became suddenly very ill, with symptoms now known to afflict myalgic encephalomyelitis sufferers. Despite an early panic about polio, eventually many of the victims were called hysteric. It’s now known as the first mass outbreak of ME.
But despite that long history, the disease’s most prominent name, and the disease’s most prominent symptom, haunt the disease, Dr. Montoya said.
“Unfortunately, the name Chronic Fatigue Syndrome has not served well the disease or the patient,” Dr. Montoya said. “There are all of these other symptoms.”
Mia is one of the lucky ones, she’ll say, despite the fact that it forced her to drop out of college at the University of Florida. Through a connection her father had with a friend who knew Dr. Montoya, they gained access to care for which others sometimes wait years.
Nancy may be even luckier. An experimental treatment developed at Stanford University, valganciclovir, cost $5,000 a month. But it worked for Nancy.
For Mia, treatment hasn’t worked as well. After that first scare in 2014, when she went from being tired to being unable to study to having dizzy spells in the fall, she finished her exams and, as happens with many patients, “crashed.”
She spent days or weeks in bed. If she could, she’d get up, go downstairs, and lay on the couch.
“My dad had to carry me upstairs,” she said. “It was like I was living, but I wasn’t alive.”
She had to withdraw from all her classes. After trying again to make it back to school, she’s now no longer pre-med.
Brea already had gone through all of that before Mia. A doctoral student at Harvard, she had no explanation for it when she couldn’t write her own name. Then it started getting worse. Pretty soon, just like Mia, she had to withdraw from school, another high-achiever forced to quit.
ME sufferers are “ballet dancers who can’t dance, accountants who can’t add, medical students who never became doctors,” Brea said in a TED Talk she gave in June 2016, sitting cross-legged in a wheelchair, her face at times twinging with pain.
“Usually, if you have a virus, you stay home, make some chicken soup, and in a few days everything will be fine, but this time it wasn’t fine,” Brea said of the flu-like symptoms she had that became a fever that became an unending illness.
That’s a similar story for other patients, Mia said. Although their stories during their struggles vary widely, the beginnings can have eerily similar circumstances.
“Many patients will tell you that their nightmare began with a “viral-like” illness,” Montoya said.
What happens next is that wide range of symptoms that eventually come together to be diagnosable.
How sufferers respond to treatment varies but seems correlated to how long the victim has had the symptoms, Montoya said.
“After a certain period of time, the rate of improvement really is small,” he said. “It could be as high as 70% to 80% in the first year of disease, but it becomes really much lower as the years come.”
That’s why raising awareness about the disease is so important. Getting people to understand their symptoms and increasing awareness in the medical community could speed diagnoses, treatments and chances of full recoveries.
On April 27, family friend Mary Margaret Vasquez’s home filled with friends and supporters as Mia and her family raised support for the cause. Mia has been creating jewelry to sell to raise money for research to fight the disease.
They watched a trailer for Brea’s documentary “Unrest,” which premiered at the Sundance Film Festival.
For the Andersons, the fight continues at home, making bracelets, making calls, finding more support to fight the disease with no diagnostic test and no cure.
“We’ve got to help all these people out there,” Mark Anderson said.