Mansfield mom among the faces of 'Chronic Fatigue Syndrome'

In 1987, a group of concerned health professionals, patients and their families formed a charitable organization dedicated to finding the cure for a baffling and debilitating illness--Chronic Fatigue and Immune Deficiency Syndrome (CFIDS). Their hope was to accomplish their mission and disband within five years. Twenty years later, CFIDS remains a mystery and the Centers for Disease Control (CDC) says only 20 percent of the possible one million sufferers have been diagnosed and are receiving treatment.

For one local woman, the road to diagnosis was filled with frustrating detours, and she is working hard to spare others the same experience. Meaghan Peterson of Mansfield was only 25 when she awoke in 1998 with a sudden onset of crippling symptoms, and her life changed dramatically as she began a six-month struggle to find a diagnosis.

“When you are going through that process and everything in your life is being taken away from you, you are just hoping for a diagnosis,” she said. “It is a very real disease.”

Meaghan was working at the time as an administrative assistant at a major investment firm in Boston, but her illness soon forced her to take disability leave. She received several frightening misdiagnoses from three major Boston hospitals before finally learning she had CFIDS.

Now married and expecting her second child, Meaghan, is a fourth-grade teacher and mother of a three-year old daughter.

“Over the past nine years I have been able to shift to high functioning,” she said. “I have basically learned how to manage it very well. It is a very delicate daily balancing act.”

To give hope to those who are suffering, Meaghan is lending her face and story to $6 million, national, public awareness campaign, “The Faces of Chronic Fatigue Syndrome,” on display at the Boston Public Library through July 23.

This national photography exhibit, sponsored by the CFIDS Association of America will give a public face to those struggling privately with this misunderstood disease. Promoting the theme: “Get informed. Get diagnosed. Get help,” the CFDIS Association hopes to continue their work toward conquering the ailment.

“Anyone walking around you can have Chronic Fatigue Syndrome,” says Sara Collins, Public Relations and Events Manager for the CFIDS Association of America. “The people who are pictured in it are people you would expect to see anywhere.”

One of the largest obstacles facing those with the disease is the assumption their symptoms are psychological rather than physical. Since there is at this time no conclusive test to diagnose it, health care professionals must work with their patients to eliminate other diseases with similar symptoms, which can delay adequate treatment. Multiple sclerosis, fibromyalgia, chronic Lyme’s disease, lupus and post-polio syndrome are all disorders, which may resemble Chronic Fatigue Syndrome Those suffering with it, do not appear to be ill, which further isolates patients whose health care professionals or family may believe their symptoms are “all in their head.”

“It’s definitely a misconception because people think you are tired and everyone is tired,” said Meaghan. “This is debilitating fatigue.”

According to the CDFIDS Association of America, patients must meet two main symptomatic criteria to be diagnosed with Chronic Fatigue Syndrome.

1) Unexplained, persistent fatigue that is not due to ongoing exertion, is not substantially relived by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.

2) Patients must also show signs of at least four of the following symptoms for six months or more:

·                   Impaired memory or concentration

·                   Unrefreshing sleep

·                   Muscle pain

·                   Headaches of a new type or severity

·                   Frequent or recurring sore throat

·                   Tender lymph nodes in the cervical or axillary area

·                   Postexertional malaise (extreme, prolonged exhaustion and exacerbation of symptoms following physical or mental exertion)

Additional symptoms may also include, chills and night sweats, low-grade fever or low body temperature, brain fog, visual disturbances, psychological problems, irritable bowel, allergies to many environmental factors and numbness, tingling or burning sensations in the face or extremities.

Women are four times more likely than men to suffer from the disorder, and many are debilitated by their symptoms in their 40s and 50s, although the disease can strike at any age, even in children. CFIDS sometimes occurs in families, but it is unknown at this time if there is a genetic link. While many with the syndrome have symptoms that provide them with a combination of debilitating days, followed by periods of normalcy, about 25 percent of those diagnosed are permanently disabled. Research has shown that those who are diagnosed within two years or less after the onset of symptoms have the highest rate of recovery. About 40 to 60 per cent of patients manage to achieve a full or partial recovery.

Meaghan, like many of those who are in partial or full recovery mode, attributes her success in dealing with the disease to a number of factors. She sees an acupuncturist weekly, and the results of these visits are manifested in her daughter Kelly and the child she and Scot will welcome in the fall.

“When I first got sick I took a lot of medication just to get by,” she said. “I began seeing an acupuncturist because I wanted to have a family.”

Though exercise can cause a worsening of symptoms, patients with Chronic Fatigue Syndrome are encouraged to work with their doctors to develop a program of graded exercise. Exertion levels are different for all patients — some can only manage hand stretches, some can participate in bicycling or moderate weight training, Meaghan finds exercise plays a key role in maintaining her health.

Since the onset of her illness, Meaghan set herself a personal goal to try and overcome many of the cognitive difficulties presented by CFIDS and pursue a career in teaching, which would afford her some flexibility with her work. She went on to gain a Masters degree and now works mornings in a job share position as a fourth grade teacher.

Meaghan says she would not have been able to get through the dark days of her disease with out the support and encouragement of her husband Scot.

“I get tremendous support from him,” she said. “This isn’t just something I live with, it is my husband, my daughter,”

Meaghan and her husband Scot work with the CFIDS to lobby for funds.

She said it is vital to her message for people viewing the exhibit to see her with her family.

“I want people to see that image of a family—that is a real possibility,” she said. “We all want to have a productive life. There is hope—seek treatment.”

To learn more about CFIDS visit www.cfids.org/CFIDS or www.cdc.gov/CFIDS.