Imagine being a healthy, active young woman planning your wedding one day, and the next, you are in constant pain, your brain is always foggy, and you are practically bed-ridden. This is what happened to 31-year-old Jennifer Brea, who first came down with myalgic encephalomyelitis (ME), or what is commonly known in the U.S. as "chronic fatigue syndrome" when she was at Harvard University. "I can't drive. I can't leave my house unattended, and I'm in a wheelchair," Brea told ABC News. What happened?!
Doctors were baffled by Brea's wide range of symptoms, which included having "spells" in which she could hardly speak or think. She would run a high fever, get dizzy, and even bump into things. Before all of this, she was so active that she was a freelance journalist in China.
But years later, while planning for her wedding, she wondered how she would even get through the vows.
Brea is raising money on Kickstarter for a documentary about ME. People with the disease don't like it called "chronic fatigue syndrome" as they feel that just makes them sound chronically drowsy and doesn't give credit to the severity of the horrible symptoms.
Doctors are still uncertain what causes ME, and a 2009 study linking it to a mouse virus has since been discredited. Even worse, since doctors are so clueless about the disease, victims are often misdiagnosed, or told they have epilepsy, migraines, or even "hysteria."
Another victim, Jessica Taylor, who got ME when she was 14, says that it often sounds like people are talking in a "foreign language." Here are some of the signs that you might have ME:
- Continually tired to the point where you can't get out of bed. This may come in spells. Taylor describes it as "every cell" in her body being unable to work.
- "Brain fog" that makes it difficult to concentrate or even understand what people are saying.
- Stabbing pains in the body, usually in the legs and arms.
- Muscles that don't work, making it difficult or impossible to walk or even feed yourself.
Milder symptoms include headache, fatigue, enlarged lymph nodes in neck or armpits, and sore throat -- symptoms that could be a huge amount of things, including flu, so it's no wonder ME often goes undiagnosed.
Brea says she has seen some improvement in her condition with an immunomodulator, magnesium injections, and lots of nutritional supplements. She also hasn't given up on her dream of having a child -- which sounds like such a scary and difficult thing to do when you've got a disease like this.
Have you ever known anyone with ME?
Image via Jennifer Brea/Kickstarter