How can a doctor determine if I have CFS?
A: Because there's no definitive blood test or x-ray for this disease that is only positive in this disease (there are many that are abnormal), CFS needed to be defined by symptoms and the absence of any other illness that can cause the symptoms. Because in the early 1990s we were in the early stages of our understanding of CFS, researchers set out to create a very strict definition of CFS that was primarily to be used for research purposes. The definition was fairly stringent to make sure that people without CFS were not included in studies on the disease. This was more important than making sure that the definition included everyone with the syndrome. In the absence of other diagnostic criteria however, the following definition has been used to define the diagnosis of CFS in day-to-day life as well as in research studies.
In 1994 the Centers for Disease Control (CDC) published the following criteria to define CFS:
1) The person had to have chronic fatigue that had not been lifelong, was not caused by excessive ongoing activities and was not substantially alleviated by rest. The fatigue needed to result in substantial reductions in previous levels of occupational, educational, social, or personal activities. In addition, the fatigue had to be clinically evaluated and no explanation found for it.
2) The person had to have four or more of the following symptoms, all of which must have occurred concurrently during at least six months of illness and which began with or after the fatigue: a) significant impairment in short-term memory or concentration, B.) sore throat C.) tender neck or armpit lymph nodes, D.) muscle pain, E.) multi-joint pain without joint swelling or redness, F.) headaches of a new type, pattern, or severity, G.) unrefreshing sleep, and H.) post-exertional malaise lasting more than 24 hours.
The small print (isn't this often where the important stuff seems to be hidden?) notes that if any of a very large number of other processes is present, the person does not have chronic fatigue syndrome.
Q: How did this "small print" affect things?
A The small print resulted in the vast majority of people with CFS not technically fitting this description. Therefore, the number of patients suffering with this illness has been dramatically underestimated. For one example, if somebody has ever had "melancholic depression", they can never be classified as having CFS. Melancholic depression is defined by having either “a loss of pleasure in activities or a lack of response to things are normally pleasurable”plus three or more of the following symptoms: inappropriate guilt, significant weight loss, brain fog, early morning awakening, increased feelings of being depressed in the morning, and or distinct quality of a depressed mood. As many these criteria are also common symptoms for CFS, having CFS can cause you to be excluded from having the diagnosis of CFS! In addition, to have "melancholic depression" you only had to have the above problems for two weeks anytime in your whole life!
Can you imagine if this same exclusion was applied to people with end stage cancer -- and that if they fit the very broad criteria for melancholic depression above they would be defined as not having cancer! I would guess that 90 percent of these cancer patients would suddenly technically no longer have cancer (unfortunately they would still die)! What if the implication of this was that they would be denied all health and disability benefits (and research funding) related to the cancer! Sadly, this is what has happened to many people suffering with CFS/fibromyalgia!
In some ways, the fine print is important though. It is important to look for these other illnesses that can cause CFS/fibromyalgia. Sadly, almost as if to add insult injury, the large print discourages doing the testing that looks for most of these diseases!
Dr. Teitelbaum is a board certified internist and director of the Annapolis Research Center for Effective CFS/Fibromyalgia Therapies, where he sees CFS/Fibromyalgia/Chronic pain patients from all over the world (410-266-6958). Having suffered with and overcome these illnesses in 1975, he spent the next 28 years creating, researching, and teaching about effective therapies. He is the author of the best-selling From Fatigued to Fantastic!" and the newly released "Three Steps to Happiness! Healing through Joy". His web site can be found at: www.vitality101.com