Jane Mostowitz loves to go country western dancing, even if it knocks her out for a week.
The 67-year-old Sunset Heights resident said she has long suffered from chronic fatigue and immune dysfunction syndrome, also known as myalgic encephalomyelitis, which is a long-term illness that affects multiple body systems and is characterized by extreme fatigue that can’t be attributed to another underlying medical condition. It can cause muscle and joint pain as well as headaches and also can affect cognitive ability and concentration.
Mostowitz said she has had the disease since she was a child and coped with every symptom associated with it, having once been bedridden for about two years. She used to have her own paralegal business but had to give that up years ago.
Still, Mostowitz tries to spend up to two hours each week cutting it up at a dancehall. Among her favorite spots is Westwind Club on Guhn Road.
“I work really, really hard to try to have a normal semblance of a life,” she said.
Mostowitz has worked just as tirelessly to try to increase awareness for chronic fatigue syndrome and advocate for medical research that can help diagnose, treat and, ultimately, eradicate the disease. For more than 10 years, she has been the president of the Houston CFIDS Association.
According to an Institute of Medicine report published in 2015, as many as 2.5 million Americans were estimated to suffer from chronic fatigue syndrome, with the majority having gone undiagnosed. The report also find that the disease costs the U.S. economy between $17-$24 billion annually in medical bills and lost incomes.
It is similar to fibromyalgia, and Mostowitz said she is among many people who suffer from both. She also said chronic fatigue syndrome often is met with skepticism, because sufferers to do not display noticeable signs of a physical illness.
“It is real, it is a disease, and we need some help,” Mostowitz said.
More than a decade ago, Mostowitz said she held meetings with as many as 50 fellow chronic fatigue syndrome patients. But participation dwindled to zero in recent years, so she now has a Facebook page dedicated to combating the disease and helping those who suffer from it.
She said nationwide funding and participation for chronic fatigue syndrome research is better than ever but still pales in comparison to other medical conditions such as Alzheimer’s disease, cancer and multiple sclerosis. But there is an upcoming opportunity that Mostowitz hopes will draw the attention of budding medical professionals in the Houston area.
The Bateman Horne Center in Utah is accepting applications for the #MEAction Blue Ribbon Fellowship, a clinical clerkship opportunity for fourth-year medical students as well as internal medicine and family practice residents. Those selected will spend one month in the fall evaluating and caring for patients with chronic fatigue syndrome and related illnesses, along with participating in clinical research.
The deadline to apply is Aug. 15. Details can be found at www.meaction.net.
Mostowitz said she hopes research leads to a diagnostic test for chronic fatigue syndrome.
“I’d love to see a cure or a vaccine,” she said.
In the meantime, Mostowitz will continue advocating for sufferers of chronic fatigue syndrome and trying to spread the word about it. She’ll also continue to try to manage her own symptoms.
Mostowitz said she has a collection of physicians who treat a wide range of symptoms, and she typically makes multiple doctor visits per week. She said she often takes naps, even pulling over to nap in the car if she feels overly fatigued while driving.
She has to carefully plan activities and factor in that she likely will become exhausted after a short time. Along with weekend outings to go country western dancing, she also enjoys having meals with friends, visiting the library, going to movies and shopping at the Goodwill store in the Heights.
“You learn how to cope with a new symptomology and find a new normal,” she said. “You fight the thing.”