Tara was 17 years old when it started. One day the enthusiastic high school senior began to feel achy, dizzy and sick. The glands in her neck were swollen and tender and she had a fever. The school nurse sent her home. The family doctor assumed it was mononucleosis.
Two weeks later, Tara was worse. Her flu-like aches intensified, her fever persisted and her glands protruded like golf balls. Fatigue advanced to exhaustion. The athletic teen, a field hockey player and member of the drama club, could hardly get out of bed. Though her blood work tested negative for mono, Tara was clearly ill. Her doctor was perplexed, diagnosing her with a non-descript “flu-like viral infection.” With no effective flu treatments available, he ordered bed rest and painkillers and excused Sara from school.
Today, over seven years after falling ill, Tara still isn’t well. She eventually recuperated enough to finish high school and even pushed her way through college, but was left with chronic pain, memory and cognitive problems, migraines, insomnia and a delicate immune system susceptible to bacterial and viral infections. She recognizes that she will never be like other lively women in their 20s.
“I just can’t keep up,” she says. But at least now, after five years of tests and the diligence of one skilled disease specialist, Tara has a diagnosis.
Women are at a greater risk of CFIDS
Tara has what is commonly referred to as CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), also known as ME (myalgic encephalomyelitis), a devastating and widely misunderstood illness that affects over one million Americans. Often derided by skeptics as “yuppie flu” or “shirkers syndrome,” studies have shown that women are up to four times more likely to suffer from CFIDS than men. Research suggests the prevalence of the illness makes it a greater threat to women’s health than AIDS, MS, or even lung cancer.Even worse, a shocking 80 percent of patients go undiagnosed, or are misdiagnosed by a medical system still largely uneducated about the illness and its complications.
Symptoms of CFIDS
CFIDS is a chronic, debilitating illness which affects multiple organ systems within the body, including the brain and heart. A cluster of overlapping symptoms and biomedical abnormalities, it is characterized by profound fatigue, loss of stamina, significant cognitive dysfunction, sleep disturbances, flu-like aches and inflamed lymph nodes.Various additional symptoms, such as low blood pressure, low blood volume, irregular heartbeat, cardiac abnormalities, shortness of breath, dizziness and skin rashes are also common. Due to impaired immune function, secondary bacterial and viral infections can frequently accompany the illness. Though no official studies have been done on mortality rates and CFIDS, advocates and patients point out that the illness is life threatening if unmanaged or undiagnosed. According to a study in Health Care for Women International, CFIDS, like AIDS, puts you at greater risk for secondary causes of death, such as cancer or heart failure. Worse, a study published in Psychological Medicine indicates that patients suffering from depression are up to eight times more likely to commit suicide than members of the general population.
Despite real symptoms, doctors are still skeptic
More debilitating than these crippling symptoms, however, can be the skepticism people with CFIDS face from family, friends, employers, insurance companies and even doctors.“There are still many medical professionals who are reluctant to treat CFIDS, and who don’t know how to diagnose or manage the illness,” explains Marcia Harmon of the CFIDS Association of America. “In research studies funded by the CDC, common barriers to diagnosing and treating CFIDS were identified among primary care practitioners. The most common obstacles identified were uncertainty about whether CFS was a real physiological illness, uncertainty about how to diagnose CFS, uncertainty about how to treat CFS and frustration – because they don’t know how to help patients,” she adds.
Why is there a debate if CFIDS is real?
Like AIDS, MS and Lupus (all of which were attributed to hysteria or psychosomatic symptoms before research proved otherwise), CFIDS has had an uphill battle to fight. Since its identification in the mid 1980s, the illness has struck seemingly at random, and leaves most patients looking moderately healthy.Its myriad of symptoms frequently mirrors those of other conditions such as Lymes disease or thyroid problems, making it easy to misdiagnose. The illness can also wax and wane, allowing patients to function normally for a period of time before “crashing” and becoming ill again, which can be confusing for family, employers and doctors. This, in combination with the lack of a standard diagnostic testing for the illness, originally caused many to label CFIDS a psychological malady, like depression.
Though expanding research on behalf of private organizations and the CDC has helped to dispel many misconceptions about the disease, the lingering effects of professional doubt are still felt throughout the medical and patient communities.
In addition, the name of the illness frequently undermines the severity of its symptoms and physical abnormalities (CFIDS goes far beyond general fatigue), to the point where patients and their advocates have petitioned the United States government for a formal name change. Most CFIDS patients contacted for this article used the term ME, the UK’s name for the illness. “At least ME sounds like a disease,” Tara explains. “Chronic fatigue just sounds like you’re sleepy.”
Evidence of CFIDS is Growing
The evidence against skeptics is growing. Two recent studies have worked particularly hard to rule out the misconception that CFIDS is form of depression (which many CFIDS/ME patients list among their symptoms) or attention-seeking behavior, two diagnoses commonly given by skeptics.One study, conducted by Dr. Hyong Jin Cho of King’s College London and published in the March-April issue of Psychosomatic Medicine, found that while placebo treatment (giving patients sugar pills in order to convince them their illness is being treated medically) relieves symptoms in over 30 percent of patients with migraines or acid reflux and up to 44 percent in patients with ulcers, only 19.6 percent of CFIDS patients responded to placebo, a number which supports evidence that the illness is physiological and cannot be treated with antidepressants or cognitive therapy alone.
Additionally, a study published in The Archives of Internal Medicine revealed that, out of a large group of CFIDS patients screened by researchers, 60 percent of patients had never suffered from depression before the onset of their illness, and a smaller percentage had no history of mental illness whatsoever, meaning that depression was an effect of CFIDS/ME rather than the cause.
However, while these findings have been useful to CFIDS researchers and patient advocates, the most promising link to understanding the illness – and finding a cure – may literally be found in the blood of the patients it debilitates.
THE GENETIC FACTOR
According to research published in The Journal of Clinical Pathology, Dr. Jonathan Kerr of St. George’s University in London has, with the help of researchers and colleagues, identified 88 gene abnormalities which produce different levels of specific proteins in CFIDS patients when compared with the general population. Within the study, patients most severely affected by the illness had 71 of the 88 genetic abnormalities (those with less severe cases had fewer abnormalities).Additionally, researchers were able to identify seven subtypes of patients: some patients had comparatively milder cases, which were aggravated by physical or cognitive exertion; others had illness profiles defined primarily by cognitive dysfunction, rather than by physical pain; and the most severe subtypes combined physical pain with cognitive, gastrointestinal, neurological and sleep-related abnormalities.
The team also acknowledged that several of the abnormal genes found in CFIDS patients have already been proven to be mutated by viruses, a finding which supports previous theories that CFIDS is triggered by viral infection. The Epstein-Barr virus (EBV) and Herpes Simplex-6 (HHV-6) are frequently cited as a potential root cause or triggers for CFIDS. Tara’s specialist believes that the mysterious illness her family doctor could not identify seven years ago was likely EBV. Tara also tested positive for HHV-6 in 2007.
Additional research suggests that some individuals, while otherwise healthy, may be born genetically predisposed to contracting CFIDS later in life. “It appears that environmental, behavioral and physiological events experienced over a lifespan – combined with a genetic predisposition – may lead to CFS,” Harmon explains. “This wouldn’t be an unusual model, since this appears to be the case with other chronic illnesses as well.”
Kerr’s researchers are now looking into whether the abnormal protein levels produced by the 88 genes can be detected in the blood. If so, the proteins could lead to concrete diagnostic tests, such as standardized blood tests, which could result in earlier diagnosis, better treatments and potentially end the skepticism within the medical and mainstream communities. The identification of subsets is also promising, as caregivers could eventually prescribe treatment options tailored to the specific abnormalities, rather than doling out blanket treatments that may be inappropriate or harmful to certain patients.
If you or someone you know is suffering from unexplainable fatigue or illness, don’t ignore it and think it will just go away. Read Could you have chronic fatigue syndrome? for more information.
