Update #2 from Jacob Teitelbaum, MD
CFS/Fibromyalgia
Their Causes and How To Treat Them Effectively!

 

Q-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.

AND

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 are 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!


Editor's Note: I sent this comment to Dr. Teitelbaum's assistant:

It's interesting that Dr. Teitelbaum chose melancholic depression as his example of the "small print," because it's included in both the list of exclusionary disorders and those that are not exclusionary, to wit:

Conditions that exclude a diagnosis of CFS:

(...)
3. Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; (...)

and

Conditions that do not exclude a diagnosis of chronic fatigue syndrome:

1. Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, neurasthenia, and multiple chemical sensitivity disorder.

[Both citations from The revised U.S. Centers for Disease Control and Prevention case definition of chronic fatigue syndrome (abridged version).]

Dr. Teitelbaum replied with these comments:

Isn't the definition of CFS fascinating! Although the definition of CFS seems to contradict itself, I suspect that in determining the epidemiology, melancholic depression is used to exclude people from ever being able to have the diagnosis of CFS. I suspect this because of a report by Dr. Leonard Jason (a wonderful man who is the major epidemiologist for CFS) in which he notes problems with exclusionary conditions in the current U.S. case definition of the CDC. This is in the Journal of Chronic Fatigue Syndrome , volume 5, No. 3/4, 1999 pp 3 -- 33. Specifically see pp. 20 -- 21. He notes that "the exclusion of people with particular psychiatric diagnoses identified by the U.S. case definition is also problematic. This issue is particularly relevant in the cases of melancholic depression, eating disorders, and alcohol and substance abuse. The U.S. case definition stipulates that all people with diagnoses of past or current melancholic depression are excluded from the diagnoses of CFS. According to the D. S. M. -- IV, melancholic depression can be characterized by the presence of either a loss pleasure in activities, or a lack of response to pleasurable stimuli and the presence of at least three of the following symptoms: inappropriate guilt; significant weight loss; marked psychomotor agitation or retardation; early morning awakenings; increased feelings of depression in the morning; and a distinct quality of depressed mood. Given that a number of these criteria involve somatic symptoms similar to those experienced by people of CFS, is possible for a person with CFS to fulfill criteria for melancholic depression solely by virtue of the CFS symptomatology. Specifically, depressed mood, weight loss, psychomotor retardation, and early morning awakening are symptoms shared by patients with CFS and melancholic depression. To obtain a diagnosis of melancholic depression, the patient needs to have the symptoms for only two weeks. During the course of becoming ill, is not uncommon for people to have several weeks or phases of being depressed and lacking pleasure in all activities. Even if one rebounds from this state after a few weeks, past history of melancholic depression would exclude a diagnosis of CFS"

That 11.9 percent of the population currently has severe disabling fatigue lasting at least one month, but the CDC uses their definition to exclude all but 4/10 of a percent is very problematic. Especially as 2-4 percent of the population likely fit the CFS pattern. Dr. Jason was unable to supply me with a breakdown of the different exclusionary causes that excluded about 90 percent of people with possible CFS. To put it simply, the criteria that is being used by the CDC in their epidemiologic studies would mean that most any teenager who ever broke up with a boyfriend or girlfriend in high school would be excluded from ever having the diagnosis of CFS in their lifetime! This report very strongly suggests that the CDC statistics do exclude people with a history of "melancholic depression" (i.e. -- anyone who ever felt down for two weeks in their life-- which obviously includes almost everybody on the planet) to be considered as ever possibly having CFS. This is why I used this example.

Best wishes,

Jacob Teitelbaum, M.D.

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Copyright © 2001 - Jacob Teitelbaum, MD [Used with permission here.]
Last Updated: December 14, 2001