The first-ever national public health campaign to educate people about chronic fatigue syndrome is in full swing.

According to the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), as well as by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems.

A study in Population Health Metrics provides evidence that CFS is a significant public health problem. Researchers at the Centers for Disease Control and Prevention found that the occurrence of CFS today is 10 times higher than the rate researchers found in the 1990s.

CFS does not discriminate as to who it strikes. It strikes people of all age, racial, ethnic, and socioeconomic groups.

However, research has also shown that CFS is about four times as common in women (522 out of 100,000) as in men, a rate similar to that of many autoimmune diseases, such as multiple sclerosis and lupus, according to the CFIDS Association. To put this into perspective, CFS is more than four times more common than HIV infection in women (125 out of 100,000). The rate of CFS in women is also considerably higher than a woman’s lifetime risk of getting lung cancer (63 out of 100,000).

The CDC and the CFIDS Association want the public to know that CFS affects a total of more than four million Americans, making it more common than multiple sclerosis, lupus and even ovarian cancer. And, again according to the CDC, CFS is just as debilitation as the previously mentioned diseases, as well as heart disease, COPD, end-stage renal disease, etc.

One of the biggest challenges in past years facing both health professionals and sufferers is that patients don’t look sick, according to the CFIDS Association. This is why it has been long debated whether or not this disease is real or not. But, the growing body of evidence that CFS is a physical, not a psychological, disorder has laid this issue to rest. Now, the goal is to educate both health care professionals and the public as well.

This is important because, despite the large number of sufferers, less than 20 percent of Americans with CFS have been diagnosed. This delay in diagnosis is a major concern, because delays in diagnosis leads to delays in treatment, leading to poorer therapeutic outcomes for the patient.

In addition, one of the most confounding problems with proper diagnosis is that sufferers usually don’t even appear ill to the onlooker, according to the CFIDS Association.

Although few studies of CFS in children and adolescents have been published, it is well-accepted that young people also do get CFS, and that it is more common in adolescents. Some of the most important information that needs to be made available are new pediatric CFS case definitions and diagnostic tools to help suffering youngsters.

CFS also has a severe economic impact according to a study done by DePaul University. The annual economic impact of CFS in the United States is between $18 and $24 billion due to lost productivity, medical costs and disability benefits.

Currently, there is no diagnostic test for CFS, but there is a reliable diagnostic algorithm - and it doesn’t take a specialist to identify if a patient has it. The causes have also not yet been identified. And, while there also is no cure, as yet, treatments do exist, however, that can help alleviate symptoms and improve a patient’s quality of life. But, many medical professionals, as well as those who suffer from this disease, are unaware of the best treatments. This is why the latest information on CFS is available at www.cdc.gov/cfs and on www.cfids.org/cfs, as well as in the new CFS Toolkit for Health Care Professional developed by the combined efforts of the CDC and CFIDS Association.


The Agony Few Know About
It is not known how many people have ever even heard of Chronic Fatigue Syndrome.

JoAnn Lam of St. Louis certainly didn’t back in 1994, during her third year of law school in California, when she was told by several doctors that she had a viral infection. She had a fever, nasal congestion, coughing and crippling fatigue. After treatments with antibiotics, a lot of rest, a visit to the emergency room and months and months of sleeping 20 to 22 hours every day, her life came to a standstill. She had to quit her job, drop out of law school, and returned home to St. Louis.

Finally, a year after her mysterious ordeal began, JoAnn was diagnosed with Chronic Fatigue Syndrome.

“It was life altering,” JoAnn said, “At least for me. I am unable to hold a job or make any full-time commitment. I never know when it is going to turn into a bad day.”

Fifteen years later, JoAnn doesn’t know how many other Americans still know little about this devastating and debilitating condition. In addition, it is very difficult to get a diagnosis. It’s a matter of excluding other medical conditions, such as multiple sclerosis, which has some of the same symptoms as CFS, and only diagnosing CFS when all other conditions have been eliminated.

“When I was first diagnosed, there wasn’t even a list of syndromes,” she said. “I had to push the doctors to test me.”

Today, a good day for JoAnn is if she has can be active five to six hours. Every day she continues to suffer from the typical CFS problems – extreme exhaustion, headaches, muscle and joint aches and pains, swollen lymph nodes, and the condition’s notable symptom, post-exertional malaise. She needs a wheelchair and help from a caregiver to conduct her life as best as she can.

Despite, or maybe because, of her health issues, she also works as a local CFS support group leader and advocate for the CFIDS Association. Over the years, she has worked with the CFIDS and discovered research and medications that have helped her to some degree with her symptoms.

“It gives me part of a life back,” she said. But research and funds are urgently needed to truly find a treatment for the millions of sufferers. In her lifetime, she hopes that, even if the cause is not found, then maybe researchers will find ways to help sufferers cope with the syndrome.

“Most of us (sufferers) are still too ill. We struggle just coping with our everyday lives,” JoAnn said. “But, I still have hope.”