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The Enigmatic Symptoms of Chronic Fatigue Syndrome

Today I’ll discuss the symptoms of Chronic Fatigue Syndrome (CFS) and why this diagnosis is so confusing. Ironically, part of the confusion about CFS comes from its name. The focus on fatigue tends to overshadow the numerous other systemic symptoms associated with CFS. Other names commonly in use include: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS); Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME; the most commonly used term outside the United States); Chronic Epstein Barr Virus Syndrome (CEBV); or the newest term, XAND (X-associated neuroimmune disorder). My son Brian, afflicted with CFS for nearly 5 years, has said that the acronym CFS is fine, but “it should stand for crippling fatigue syndrome.” He’s right.

The fatigue of CFS is very different from the everyday “I’m tired” complaint that sleep-deprived, middle-aged women & men juggling multiple roles, stressors, and activities may feel. . .or that teenagers who have stayed up way too late online complain of the next morning. It has been described as feeling constantly like you have the flu, or feeling like you have mononucleosis that just won’t go away. Classically and characteristically, it is fatigue that does not result immediately from exertion, is not relieved by rest or sleep, and it results in a significant reduction in previous activity levels. It is persistent & prolonged. To make the diagnosis of CFS, this fatigue has to persist for 6 months in an adult, or 3 months in a child. Often, it is brought on by physical exertion in the previous 24 hours; this is called “post exertional fatigue”. This is a difficult concept for most people to understand. When Brian is having a “good day”, for example, he might be able to go to school for a few periods or play soccer for 10 minutes and look like one of the guys. But for the next 24--72 hours he’ll pay a price: usually an exacerbation of many of his other CFS symptoms as well as an overwhelming fatigue. For many patients who are much more severely affected, doing a load of laundry or preparing a meal could be the excessive exertion that causes a post exertional flare up or “crash”.

Other classic symptoms CFS include muscle pain (which may or may not be related to fibromyalgia); cognitive dysfunction (including impaired memory and concentration) or "brain fog"; persistent sore throats; persistent headaches; dizziness; poor balance; cold/heat intolerance; food or chemical sensitivities; and unexplained general malaise. While the number of hours spent sleeping is often significantly prolonged, it is frustratingly unrefreshing.

One of the most confusing things about CFS for those who don’t live with it (in themselves or in a loved one) is that people with CFS “look fine” when their symptoms are not exacerbated. How can someone look “fine” when they have such a serious illness? How can they feel “fine” one minute and then seem to run out of energy the next? The best way I can explain this is by using the example of a brand-new car. You can drive that car all day and it will look great. But, if you run out of gas, the car will suddenly not go any further. It will still look fine, but it won’t run. The car could also develop many other problems—with the electrical system, fan belts, and numerous other connections—where it will run, but just not smoothly, reliably, or well. But it will still look “fine”. Similarly, in people with CFS--whether they’re adults, children or teens—once they run out of energy, they can’t go. Fortunately, with the car, we can replace the gas or fix the electrical connections. With proper maintenance and regular refilling, the car should run just fine. In people with CFS, however, we haven’t found a treatment which can replace “the gas” or identify the other connectivity problems. All that these patients have at their disposal are attempts at regular maintenance: limited activities; frequent rests or naps; strict sleep schedules; proper nutrition and hydration; vitamin supplements; mild, graduated exercise programs (when well enough and starting low & slow enough); and taking measures to avoid infections, which can often trigger a relapse.

Because the cause of CFS is unknown, it is difficult to classify. We do know what CFS is NOT, however: it is not a psychiatric disorder or a manifestation of depression, even though many patients with CFS become depressed as a result of having a chronic, difficult to manage illness with no end in sight. We have long thought that patients with CFS may have a genetic predisposition which is then triggered by any viral or bacterial illness, head trauma or unknown environmental causes. The most recent research about XMRV, a retrovirus shown to be identifiable in a majority of patients with CFS in one study by the Whittemore Peterson Institute (WPI), raises questions about the role of XMRV in either the causality of CFS or its pathogenesis. It also raises questions about the transmission of this retrovirus and how CFS may be transmitted. While there are some studies showing a higher incidence of CFS amongst family members or those in high risk occupations (e.g. physicians & nurses), there are many spouses & immediate family contacts who have lived with people with CFS for decades who have not contracted CFS or related diseases. While there are four reports of community outbreaks of CFS since 1984, most cases of CFS appear to be isolated.

CFS can affect people of any age, race, or socioeconomic group. It most commonly affects women 20--50; women are affected about four times more commonly than men. In teens and children, males and females are equally affected. We do not have good data about how many teens and children there are who may be affected with CFS. Like adults, however, we suspect that as many as 85% of patients may not have been properly diagnosed.

There is also a wide range of presentation of CFS cases. As we learn more about CFS, we may discover that there are two or more subtypes. It is clear that some patients are completely debilitated and bedridden or housebound; others can work or attend school at least part time, but any physical exertion may worsen their symptoms. Some patients appear to have a relapsing/remitting form of the illness where they have a few good months of the year, but then experience a crash, often in the early fall for unknown reasons. US women’s world cup soccer champion Michelle Akers has been the most well known exception: she managed to play elite soccer only with constant medical attention and frequent intravenous infusions, often at half-time during a game! Unfortunately, many CFS sufferers are denied adequate care or disability insurance benefits because doctors, teachers, and employers fail to take this condition seriously.

To read Dr. Donnica’s articles on CFS, click below:

Educating Children & Teens with CFS: The Show Must Go On

The Diagnosis of CFS - Do I—or Does My Child–Have CFS?

Treatment of CFS

What is Chronic Fatigue Syndrome: Brian’s Story & Making the Diagnosis - Could My Child have Chronic Fatigue Syndrome?

XMRV Sheds New Light on Chronic Fatigue Syndrome

Do I—or Does My Child--Have CFS?

Created: 11/4/2008  -  Donnica Moore, M.D.
Reviewed: 2/10/2010  -  Donnica Moore, M.D.

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