EagleTribune.com, North Andover, MA

July 13, 2007

Fighting fatigue: Local woman, art show work to battle stigma of chronic fatigue syndrome

By Julie Kirkwood , Staff Writer

Jean Harrison knows that some of her former colleagues in the art world think she was a prima donna, or worse, that she was lazy.

Toward the end of her career restoring paintings, she was working at the Peabody Essex Museum in Salem, Mass., and had days when she couldn't get herself out of bed before 1 p.m. She often worked at the museum alone until 11 p.m. or later eating Cheez-It crackers and drinking Diet Coke. Her work sometimes wasn't finished until the very last minute. Some days, she slept 16 or 18 hours.

Thinking it might be depression, she saw a doctor. She took kung fu classes, hoping exercise would help. She even got tested for attention deficit disorder.

"I was eager to find anything that would treat this," Harrison said. "I knew there was something wrong."

Nothing worked. She got worse.

"I went to the museum one day and said I thought I would probably be out of work for a while," Harrison said. "I was crawling on the floor - crawling, literally - to get to the bathroom. ... I was probably asleep almost 20 hours a day, easily."

That was in 1994. Harrison, 54, now knows she has chronic fatigue syndrome, a disease that affects an estimated 1 million Americans, the majority of whom have never been diagnosed.

It is a disease that many people assume is all in the patient's head, even though numerous research articles have been published showing otherwise, said Kim McCleary, president and chief executive officer of a patient advocacy group called The Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

That's why The CFIDS Association has put together a photo exhibit, funded by the federal Centers for Disease Control and Prevention, of people who have chronic fatigue syndrome. It opens at the Boston Public Library on Monday, July 16.

"We chose people who might, as a group, represent people you'd see in the mall or the library, people who would remind you of all the people in your life that could have this," McCleary said.

The purpose is to help the roughly 80 percent of patients who don't know they have the disease to learn about chronic fatigue syndrome and feel comfortable seeking help, she said.

"This is real and it has a devastating effect on people's lives," McCleary said. "But there's hope out there. There's courage and dignity, even though there is still some stigma."

Harrison believes her chronic fatigue symptoms started when she was only 6 years old, and have reoccurred periodically throughout her life.

She was lethargic through most of her childhood, but she got good grades and breezed through Wellesley College, she said, earning an art history degree. Then she had a bad episode several years later when she was in England learning art restoration. She felt ill and her glands were so swollen, she said her doctor thought she had lymphoma.

This was in the 1980s, a few years before the phrase "chronic fatigue syndrome" was coined and made a big splash in the American media.

What brought it to the public's attention were two cluster outbreaks of the symptoms, McCleary said, and the scientists looking for the cause quickly discovered other patients who weren't associated with the clusters.

The stigma followed close behind, as patients - often Caucasian, upper-middle-class women who could afford to push for answers - went to their doctors complaining of symptoms that couldn't be confirmed by any laboratory test.

"The term 'yuppie flu' came into use," McCleary said. "That was a real misnomer but it stuck. Then it sort of developed into this perception that these were just whiny, white women - type A personalities - who said 'I want it all,' then decided they didn't want it all anymore and this was their way out. ... Medical providers just sort of wrote these people off as having a character weakness or something. It really did create a barrier to medical care."

Harrison was fortunate enough to find a doctor who took her condition seriously and supported her, even when she wanted to try an experimental new treatment. Harrison had read studies showing that some chronic fatigue syndrome patients have low blood volume, so she went to Salem (Mass.) Hospital to get tested. Sure enough, her blood volume was low.

Her doctor supported her decision to try something experimental: regular infusions of saline solution directly into her bloodstream.

Initially the infusions were given through her arms, but she now has a Port-A-Cath surgically implanted in her chest. She gives herself infusions several times a week.

Though the infusions made her feel much better, she said chronic fatigue is still something she fights every day. In some ways it's harder now, she said, because she looks healthy.

"I'm not missing an arm," Harrison said. "I'm not missing a leg. I look fine."

As a result, people don't understand why she avoids even the lightest physical exertion, which she has learned through experience will make her exhausted for days.

Even her own family looks at her with skepticism when she suddenly has to lie on the floor because her blood pressure has dropped, even though "orthostatic instability" (instability when standing) is a well-documented side effect of chronic fatigue syndrome.

When Harrison stands up, her blood pressure drops, her pulse races, she feels dizzy and her brain goes haywire. If she stands up in the middle of a telephone conversation, she said, she loses her train of thought.

"I'm not stupid," she said. "It's just there's something neurologically wrong."

Harrison said she hesitated about telling her story because some people still don't take the disease seriously. She said she knows other people living North of Boston who have chronic fatigue syndrome but don't tell anybody because they don't want to lose credibility. Instead, she said, they say they have a back problem, or make up some other excuse to lie down.

What made her decide to tell her story is the same thing that McCleary believes motivated patients to have their portrait taken for the chronic fatigue photo exhibit.

"It's so important that the message get out, how devastating this can be," Harrison said.

Understanding chronic fatigue syndrome

What is chronic fatigue syndrome?

A complex illness that causes profound exhaustion, poor stamina, problems with information-processing and memory, flu-like symptoms, pain in joints and muscles and sleep problems.

What's the evidence that it's a real disease?

Scientists at the U.S. Centers for Disease Control and Prevention published a study last year in the journal Pharmacogenomics that documented certain genes and gene activity specific to chronic fatigue patients - a biological basis for the disease.

This was just the latest in a large body of research that has accumulated over the past five years showing real physiological differences between chronic fatigue syndrome patients and healthy people.

The symptoms sound like clinical depression. What's the difference?

Aside from the physiological differences (chronic fatigue patients have low cortisol levels, for example, whereas depressed patients tend to have high cortisol levels), the patients feel different, too.

A depressed person doesn't have the will or desire to get up and do anything. A person with chronic fatigue typically is desperate to get up and be active, but is physically unable.

What causes chronic fatigue?

This is still not fully understood. Evidence seems to point to a combination of three factors:

1. Genetic predisposition.

2. Some condition that weakens the immune system, such as stress at work or overtraining your body.

3. Some triggering event, such as a virus, a bacterium, a toxin or a death in the family - an event so powerful that it overwhelms the weakened immune system, tipping the whole body off-balance.

If there's no cure, why get a diagnosis?

While the disease can't be cured, symptoms can be controlled. Doctors use therapy or medications to help patients sleep better, manage pain, deal with any depression that arises as a result of the disease, improve their memory and concentration, eat better and gently exercise.

Also, doctors may try experimental treatments, such as saline infusions to increase blood volume (some chronic fatigue syndrome patients have abnormally low levels of blood) and antiviral drugs (for patients whose illness began suddenly, perhaps triggered by a viral infection).

I'm sleepy all the time. Do I have chronic fatigue syndrome?

Chronic fatigue syndrome is more than just sleepiness. It is fatigue that lasts at least six months and is severe enough to interfere with daily activities. The fatigue is present when you wake up and persists throughout the day. It gets worse with physical exertion and psychological stress.

The fatigue may begin in conjunction with a cold-like symptoms, such as painfully swollen lymph nodes, fever, runny nose and chest congestion.

Other symptoms include trouble sleeping, trouble concentrating, sore throat, headache, joint pain, muscle pain and abdominal pain.

Source: The Chronic Fatigue and Immune Dysfunction Syndrome Association of America and Kim McCleary, The CFIDS Association chief executive officer and president.

If you go

* What: "The Faces of Chronic Fatigue Syndrome" photo exhibit, part of a $6 million public awareness campaign funded by the U.S. Centers for Disease Control and Prevention

* Where: Boston Public Library, 700 Boylston St., Boston

* When: Monday, July 16, through Monday, July 23

* How: Admission is free. For more, call 800-442-3437 or check out www.cfids.org.