My On-Going Battle Against Chronic Fatigue Syndrome
It would be easiest to start with the basics of this particular disorder. Chronic Fatigue Syndrome was first recognized back in the late 1980s, 1988 to be exact, and was named the "yuppie flu" (6). It suffered a lot of grief and went through a credibility crisis because it was most common in women between the ages of 40 and 60 (6). In response to the lack of credibility it first received Dr. William Reeves, the Center for Disease Control and Prevention's (CDC) lead CFS scientist offered his explanation by saying: "One of the most common stereotypes was that this was a bunch of hysterical, upper-class, professional, white women" (6). It was very similar to the AIDS outbreak in the late 1970s and early 1980s when no one really paid attention to what would become one of the deadliest diseases to ever strike America; chronic fatigue syndrome is not deadly but if research were perhaps started earlier than it was, we might know more about the disorder than we do today.
Chronic Fatigue Syndrome affects more than 1 million people in the US alone and is most commonly described as a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may also be worsened by physical or mental activity (1). It is defined by three main criteria- severe chronic fatigue that lasts at least six consecutive months or longer, the person must currently have at least four symptoms and the symptoms cannot predate the illness (1). Some common symptoms that people with CFS have at the time of diagnosis are sore throat, tender lymph nodes, muscle pain, un-refreshing sleep, substantial impairment in short-term memory or concentration, multi-joint pain without swelling or redness, headaches of a new type/ pattern or severity and post exertional malaise lasting more than 24 hours (1). Every person, regardless of age, gender, ethnicity or socio-economic situation, is at risk for contracting this disorder, though there are certain groups that are more likely than others to get it. CFS affects women at 4x the rate of men and it is most common in people in their 40s and 50s (1). Children are also at risk but if they do acquire the disorder, then it will most likely develop during their teen years. During my freshmen year in high school I suddenly started feeling completely drained of energy and continuously lost weight without any apparent explanation; I was only 14-years-old. At first I thought it was because it was the middle of competition season for both dance and figure skating so I took a few days off to recover my strength; unfortunately my strength never recovered so it was off to the first of four hospitals for me. Some other symptoms associated with CFS are extreme weight loss, shortness of breath and dizziness, which I also had about 4months prior to my first hospital visit. My first hospitalization was because of severe dehydration and malnutrition because I was so weak I could barely feed myself, let alone stay awake for anyone else to try to feed me. This disorder can be just as disabling as lupus, congestive heart failure, rheumatoid arthritis or multiple sclerosis (1) and just like other diseases symptoms can be worsened by stress, too much exercise or lack of sleep (5).
The exact cause of chronic fatigue syndrome is not yet known but scientists have come up with some possible causes. For the most part it is becoming commonly accepted that CFS may be related to an infection that has effects on the human immune system, most likely an infection of the viral description (5). Two main viruses have been intensively studied over the past 20 years or so but have not yielded any suggestion to a cause/effect-relationship- the Epstein-Barr Virus (EBV) and the bacterium Chlamydia pneumonia (C-pneumonia) (5). As far as EBV goes, nothing absolutely conclusive has been found. It definitely causes mononucleosis but it has only been associated in some cases; EBV, for right now, is said to not be the main cause of CFS (5). CFS is not the same as a long-term EBV infection or long-term mononucleosis. I personally tested positive for EBV, but negatively for mononucleosis which struck my doctors as odd. The study of C-pneumonia has produced similar results. It was shown to definitely cause pneumonia and other such illnesses but since it does not show up in all cases of CFS researchers can only conclude that it is only a possible cause (5). C-pneumonia is curable so if a person with CFS also has C-pneumonia there are antibiotics that can be taken to improve the symptoms. It has been proven that candida albicans infections (yeast infections) do not cause chronic fatigue syndrome (5).
Some disorders/diseases that share similar symptoms and that may be confused with CFS are adrenal insufficiency, AIDS, fibromyalgia and thyroid, Lyme, liver and kidney disease (5). Because so many other diseases have very similar if not the same symptoms as CFS it is extremely hard to diagnose someone with CFS; all other possibilities have to be ruled out first which takes a considerable amount of time. It took about 10 months from the time I first complained of symptoms in November 2001 to when I received an official diagnosis in August 2002; I lost almost an entire year of my life because of this disease that I can never get back. The main problems with diagnosing a patient with CFS is that there are no outward physical signs and there are no official laboratory tests that can be performed (1). The most important diseases that need to be eliminated as possibilities are mononucleosis, Lyme disease, thyroid conditions and multiple sclerosis (1); all of these run in my family so my doctors wanted to be absolutely sure that I did not have them. Research conducted by the CDC has shown that less than 20% of patients that actually have chronic fatigue syndrome are officially diagnosed with it (1).
The biggest problem with diagnosing someone with chronic fatigue syndrome is the fact that it is most similar to fibromyalgia, or FM (2). Similarities include reduced blood flow in the cerebral cortex (grey covering of the brain that plays a central role in memory, attention, consciousness and perceptual awareness) and midbrain (involved in consciousness and motor function) (4), suppression of the hypothalamic-pituitary-adrenal axis (controls reactions to stress and regulates the immune and digestive systems and energy usage) (4), disturbed stage 4 sleep (a deep, rhythmic sleep indicated by slow brain waves) (3) and evidence pointing to a genetic factor as a possible cause (2). There are, however, very obvious differences between the two diseases. These differences include substance P (neurotransmitter that sends pain signals) being elevated in FM and RNaseL (cellular antiviral enzyme) being elevated in CFS; CFS is has a obvious symptom of extreme fatigue whereas FM has an obvious symptom of extreme pain (2). The supposed causes of CFS and FM are extremely different what with them being flu-like or infectious illness and trauma to the body (i.e. accident, surgery or injury) respectively (2). So in retrospect, the real question here is whether or not FM and CFS are related in any way. As with all topics in science there are people on every side; some say they are two completely different illnesses while others proclaim they are different categories within the same disorder. And of course there are those that support the notion that FM and CFS are two distinct disorders with similar symptoms (2). One of the most recent pieces of research on this particular question of chronic fatigue syndrome comes from an article from September 2002 which was published in Fibromyalgia AWARE, a publication of the National Fibromyalgia Association. In this article Charles W. Lapp, MD, an expert researcher for CFS and FM stated that his recent findings found that "70% of persons with CFS met the criteria for FM and 70% of persons with FM met the criteria for CFS" (2). The article also mentioned that what you are diagnosed with may depend on who you consult; if you consult a rheumatologist you will most likely be diagnosed with FM and with an infectious disease specialist the diagnosis will most likely be CFS. Another option is to consult a family doctor or general practitioner but they will be likely to diagnose you with whichever disease they are most familiar (2). What it comes down to is that more research is needed before any specific conclusions can be made.
There is no known cure for chronic fatigue syndrome so therefore any possible medications or treatments are geared towards symptom relief and improved function (1). Some examples of treatments are pain medications and stimulants (5) and changing your lifestyle. This can include reducing stress, dietary restrictions, drug therapies to treat sleep and pain symptoms and finally, low to moderate exercise (1). I lived an very active lifestyle before I contracted CFS; it was extremely hard for me to come to terms with the fact that I would no longer be able to do everything I once did before. That meant giving up dance and figure skating competitions and cutting back on all other activities; it still bothers me to this day and most likely will for the rest of my life. As with any other illness the longer a person has CFS before and even after diagnosis, the more complicated the illness appears to be (1).
There have been very few cases where people have completely recovered from CFS with an average of 5-10% (1). Chronic fatigue syndrome affects everyone differently. Some people remain homebound while others resume their previous lifestyle but may still experience a few symptoms. I was able to somewhat get my life back after about 2 ½ years of remaining inactive and I am working even harder to become the unstoppable competitor I once was. Improvement rates are much better than the recovery rate. According to a survey taken last year in 2005, about 8-63% reported signs of improvement, with a median of 40% improving during follow-ups (1). Although these are large ranges, it gives hope to those who are only recently being diagnosed with CFS that they can possibly get better.
The most recent research in the process of being conducted focuses on a possible genetic cause for CFS. Recent results show that CFS seems to be a heterogeneous disease (6). "It's probably not just one diagnosis. We have demonstrated that there are at least 4-5 molecular profiles and groups of people that make up this complex of CFS," says Dr. Suzanne Vernon, the molecular epidemiology team leader for the CFS Research Laboratory at the CDC (6). She also says, "There are differences in the actual genetic make-up, in the DNA code, that probably results in differences in gene activity and in the manifestation of the illness itself. We've brought together a whole bunch of different types of data- genetics, gene activity, clinical information, physiological markers, ways to describe how the person is feeling- and wrap that all tighter to try to generate a molecular profile (6)." A basic summary of what scientists are now looking at in regards to the cause of CFS is the involvement of the hypothalamic-pituitary-adrenal axis. Dr. William Reeves had this to say on the subject of the on-going research- "The HPA axis works as a physiological marker of accumulated adaptation to stress. To some extent, genetics determine how you react to these stressors, and more important, they actually determine your subsequent reaction to stress later during the life span. Our working hypothesis: the HPA axis and the brain is a plastic organ which changes its actual physical architecture depending on stresses accumulated over the lifetime (6)." Obviously these findings are relatively new and need to be replicated in order for them to be considered as good or bad science; the CDC is currently collecting more data on CFS from people in Georgia (6).
Writing this paper was fairly difficult for me because I was not sure how much information about myself I was truly willing to share with the public. However, once I began I realized that by putting my own experiences out there for everyone to read about I might actually be contributing to the on-going research for chronic fatigue syndrome. Most of the research I found for this paper were things I had heard for the past five years. I really hope someone who reads this who has chronic fatigue syndrome can know that someone else had a similar experience as the one they may be going through now. Hopefully within my lifetime, a cure or definite cause will be found and I will have more answers to my questions. If that turns out to be the case, I will most likely have new questions about the new information.