What is Chronic Fatigue Syndrome?
by Lesley Ann Fein MD, MPH
Both patients and physicians continue to think of chronic fatigue syndrome as a "wastebasket" diagnosis, or one of exclusion. This is complete misconception.
CFS or ME (Meningo-encephalopathy) is very well studied both in the U.S., Europe and Japan. The current estimate is 1 million cases in the U.S. and 2 million in Europe. The actual numbers most likely greatly exceed these estimates.
This is a "syndrome". In other words, a collection of symptoms and manifestations, rather than a diagnosis based upon a specific test.
The primary event is an infection. Infectious agents that have been associated with CFS/ME are Borrelia, EBV, CMV, HHV6, HHV7, Parvovirus, Chlamydia pneumonia, Mycoplasma species, Q fever, Ross River syndrome and herpes virus 1.
The role of the newly discovered XMRV virus as a common denominator is still being debated.
There have been studies suggesting genetic predisposition to developing CFS in the face of these infections.
This is a small summary of the myriad of physiological and metabolic dysregulations that have been established:
1. Cardiac abnormalities: elevated resting heart rate, decreased cardiac output, abnormal T waves, biopsy evidence of fibrosis and muscle disruption, and patients hearts have to work 50% harder than normal hearts. In addition, many patients have POTTs syndrome, or autonomic neuropathy. This results in dizziness and fainting in the upright position, because the heart is not sensing that it needs to adapt to working harder against gravity, and ultimately the brain is not adequately perfused, and patients have top lie down before they pass out.
2. Exercise response: patients with CFS are unable to tolerate aerobic activity. As opposed to "normal" people, these patients do not respond by improving aerobic capacity, but rather get premature anaerobic metabolism, and post-exertional pain and malaise. These symptoms are associated with elevation of multiple inflammatory substances. Part of the poor exercise capacity could be related to low red blood cell counts and low blood volumes documented in these patients as well.
3. Cellular dysfunction: low ATP levels and Glutathione depletion. Markers of increased oxidative stress. This is most likely why there is an inability to exercise as these are the "energy" blocks of the cell. The "fuel" of the cells is inadequate to generate energy required to function normally, let alone the up-regulation required for exercise.
4. Sleep disorders are almost universal: PLMS (periodic limb movements), restless leg syndrome, myoclonic jerking, "alpha intrusion waves" not allowing the brain to go into a deep sleep and wake people up when they reach stage 2 sleep, UARS (upper airway resistance syndrome) similar to sleep apnea, non restorative sleep resulting in "dysania"-foggy, stiff, tired and sore in the morning
5. Probably the most key issue is brain dysfunction, as was so elegantly presented by Hirohiko Kuratsune at the 2007 IACFS conference in his brilliant talk: "Brain Dysfunction is a key abnormality for understanding the state of chronic fatigue." Brain SPECT scanning is abnormal, and even the brain goes in to anaerobic metabolism. In other words, after trying to read or "exercise" the brain, there is accumulation of lactic acid showing metabolic dysfunction in the brain as well. The cascade effect of brain dysfunction affects neuroendocrineimmune systems throughout the body. Elegant studies from Georgetown show findings in the spinal fluid unique to CFS patients.
The treatment must be tailored to each individual patient. One needs to identify as much as possible which organisms are being implicated and target those organisms. In addition, we need to address all the "fallout" effects, i.e. the sleep, the pain, the metabolic dysfunction, the autonomic dysfunction, the serotonin depletion always associated with chronic pain syndromes, nutrition, hydration, stress avoidance etc. The studies have clearly demonstrated a direct inverse relationship between stress and immune function. Since you are already dealing with a syndrome associated with poor immune function, adding stress is devastating to recovery.
The research is fast and furious, and hopefully this will no longer be a diagnosis without a cure. It is certainly a diagnosis with potential treatments, and the usual response to "just go home, see a psychiatrist and take anti-depressants" is not the answer. Also, many patients have been made to feel lazy. They need to be reassured that it is not their fault that they are unable to perform even daily tasks without exhaustion. This sense of guilt is not only completely undeserved, but often implied when physicians, friends and families tell the patients to just "push through" while not understanding how difficult it is to get out of bed every day. These patients need a lot of compassion and emotional support. They have been misunderstood and poorly treated for many years, and deserve a huge apology from a medical community who has been dismissive and condescending.
