Erica Verrillo of Whately rarely leaves her house. She is exhausted much of the time and spends many days in her bathrobe, not venturing far from her bed. At her worst moments, a toothbrush or hair comb might feel as heavy to lift as an anvil.
Verrillo, 63, has chronic fatigue syndrome, also known as myalgic encephalomyelitis, a miserable disease that has stolen years of her life, but is little understood by the medical community.
Besides overwhelming exhaustion, the illness is characterized by widespread muscle pain and cognitive problems.
Though she has improved in recent years, she still has many rough days.
“It takes a big chunk of your life. When you have an illness like this, it’s hard to make any plans for the future. You can’t even make a plan for tomorrow,” she said in a recent interview at her home.
According to the Centers for Disease Control in Atlanta, over one million people suffer from an elusive disease, that due to a lack of research, say health professionals, leaves patients frustrated and untreated. Most never recover.
“Because there has been little government funding, there is no diagnostic test,” said Rivka Solomon, a Northampton area woman who also has the illness. “There is no treatment.”
Even its commonly known name — chronic fatigue syndrome — seems to minimize the suffering, she says. That’s why people like her prefer to call it myalgic encephalomyelitis, or ME for short, the named used by the World Health Organization.
Frustrated with their own circumstances, Verrillo and Solomon are trying to help others like them by trying to spread awareness of the disease and seek support for more research from the federal government and the medical community.
While mostly working from her bed, Verrillo has researched and co-written a book called “Chronic Fatigue Syndrome: A Treatment Guide” to educate those who want help.
In September a group, led by Solomon, demonstrated outside Northampton City Hall as part of a national movement called “Millions Missing,” organized by the national patient advocacy organization #MEAction. The protesters placed empty shoes on the steps to draw attention to the millions of ME patients across the country who are so sick that they are missing school, jobs and their social lives, and are unable to speak up for themselves.
The activists prompted Northampton Mayor David Narkewicz to read a proclamation the following month on the steps of the City Hall, declaring May 12 the official Myalgic Encephalomyelitis Awareness Day.
“If this helps to raise attention and bring it to light for the broader public, then that is a good thing,” Narkewicz said in a recent interview.
There are theories about the origins, but the illness largely remains a mystery, said Lisa Hall, a nurse at Northampton Integrative Medicine, a group of health practitioners who use both conventional and alternative methods.
“The thing that is very challenging is we don’t have a definitive understanding of the cause or a way to treat it and make people better,” she said. “In most cases we don’t make a dent in the symptoms and people are just devastatingly ill. They are disabled.”
There is no blood test or simple diagnostic tool. Diagnosis comes by first ruling out other illnesses and then zeroing in on symptoms that are hallmarks of the condition, like when patients report getting exhausted rather than energized by exercise, a symptom called “post-exertional malaise,” according to Dr. Nikolkaus Kashey, a pediatrician and internist at Baystate Medical Center.
“It’s a constellation of symptoms,” he said.
Patients may report experiencing extreme fatigue for more than six months in combination with unrefreshing sleep and post-exertional malaise. Either cognitive impairment or feeling light-headed upon sitting up are also symptoms that, in combination with the others, can lead to a diagnosis.
At age 39, chronic fatigue syndrome made Verrillo so sick she had to give up her work as a doctoral student at the University of Texas at Austin and stop traveling to Guatemala where she worked with her husband at an anthropology field school. She struggled to raise her two young children, could no longer stand up for any length of time because of pain and vertigo, and could not concentrate while reading or writing.
“It is just devastating. It can be so dire you can feel like you are going to die,” said Solomon, 54, who also has been sick off and on for decades. “People get so weak they can’t feed themselves.”
Research is slow in coming, but a recent study in the Proceedings of the National Academy of Sciences found that patients with chronic fatigue syndrome might be experiencing a sort of human hibernation caused by a slowdown of their metabolisms. The scientists theorize that this could be the body’s reaction to environmental stress, like exposure to certain chemicals, a virus or an infection.
Solomon’s illness started with mono when she was a college student. She says she could barely get out of bed for a year. She recovered, for the most part, but still suffered from exhaustion, which got worse after a case of bronchitis. As the condition progressed, she sought help from an infectious disease doctor in 1994, and through a process of excluding other diseases, was diagnosed with chronic fatigue syndrome.
Exhaustion and pain left her barely able to move.
“It felt like there was something deeply wrong on a cellular level,” she said.
Her illness continues today with symptoms that sometimes make it difficult for her to leave her house, or even her bed for weeks or months at a time.
Verrillo’s illness began in 1987 with an intestinal infection that she picked up in Guatemala. It left her with flu-like symptoms that never went away.
“My doctor kept writing ‘Flu?” on my chart, but you don’t have the flu for five years,” she said.
Her muscles became sore. She had the swollen glands, low fever, and the insomnia that many patients report.
Then, in 1992, on another trip in South America, she got sick again with another intestinal bug. This time her symptoms were in overdrive.
In the worst moments, her body became skeletal. She had trouble swallowing, digesting food and lived on a diet of mostly white rice and chicken.
She had constant burning pain all over her body that worsened with movement.
Desperate for answers, she traveled to an alternative clinic in Mexico called American Biologics, where doctors diagnosed her with chronic fatigue syndrome.
When Verrillo got back from the clinic, she says, her son and daughter, 3 and 7, at the time didn’t recognize her. “I had lost so much weight they didn’t know who I was.”
Verrillo said she sought out a doctor who specialized in the disease in North Carolina, who confirmed the diagnosis.
Some doctors think that viruses that typically lie dormant in healthy people are chronically active in people with this illness, Hall said.
So, sometimes patients are treated with anti-viral medication, which leads the viruses to become dormant, but only as long as the patient takes the medicine, she said.
“The hope is that by allowing your immune system to fight the virus that your immune system will get strong again and be able to keep the virus dormant, however that isn’t always how it works,” she said.
“We do have success in helping people have a better quality of life, but there are many patients that remain disabled and if they try to push it in any measure then they are going to be in bed for days.”
For the two years that followed her trip to the clinic in Mexico, Verrillo stayed in bed.
“Nothing would stop the pain,” she said.
She learned how to meditate and would lay perfectly still on her back for six hours a day. Light hurt her eyes. Touch was unbearable.
Friends and relatives pitched in to stay with her and help.
In January of 1993 she reached a turning point.
“That was when I decided to die. That was when I decided to let go,” she said.
What happened instead is she started to get better.
“Once I gave up … I removed all stress. The whole time I was fighting, when I started to cooperate with my body, I started to heal. My body said ‘lay here and rest’ and that’s what I did. It just needed a whole lot of rest. All the fighting was pouring adrenaline in my body and I decided to just float with it.”
During that time, she also tested positive for a number of allergies and received a cortizone shot, which, while according to Hall is not a typical treatment for chronic fatigue syndrome, helped control her symptoms.
Divorced, Verrillo is now living alone, her children are grown and while she still struggles with weakness and fatigue, many of her symptoms are still stable.
“I feel better when I am horizontal, more blood is going into my brain,” she said.
When she can muster the energy, she finds joy in tending to her garden and bird watching in the wooded area around her home.
“You learn to appreciate everything you can do,” she said. She tries to stay optimistic.
“I am cheerful in a way that I don’t think you could be if you haven’t had the contrast.”
Verrillo and Solomon hope that their efforts, combined with the activism of others, will help persuade government officials that funds are needed for chronic fatigue syndrome research.
“People need to understand how absolutely devastating this is.” said Solomon.
Lisa Spear can be reached at lspear@gazettenet.com.