How We Approach Chronic Fatigue Syndrome
What Is Chronic Fatigue Syndrome (CFS)?
Chronic Fatigue Syndrome (CFS) is a condition in which very modest degrees of physical or mental exertion induce severe fatigue. Increased activity typically causes symptoms to worsen. These exacerbations might not appear for several hours, or even until the next day. Over-doing can cause a flare-up that last for hours or even days.
The federal government’s Center for Disease Control has established working criteria for the diagnosis of CFS.
To diagnose CFS, there must be persistent or relapsing, and debilitating fatigue that persists for 6 months or more. The fatigue must cause a substantial reduction of previous activity and not improve substantially with normal rest.
In addition, the patient must also meet four of these eight minor criteria:
- Impaired memory or concentration
- Sore throat
- Painful/tender nodes especially cervical or auxiliary
- Muscle pain
- Multi-joint pain
- New headaches
- Unrefreshing sleep
- Post-exertional malaise (lasting >24 hrs)
Appropriate alternative diagnoses need to be excluded as the main cause of the problem. If other potentially fatigue causing conditions are present (e.g. depression, insomnia, diabetes), the physician has to judge whether these or CFS are the main cause of symptoms. (Source: Fukuda, C. et. al., The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Annals of Internal Medicine 1994; Annals of Internal Medicine 1994;121:953)
Many people with Chronic Fatigue Syndrome also qualify for the diagnosis of Fibromyalgia and vice versa.
Dr. Podell Is Among The Nation’s Leading Chronic Fatigue Syndrome Doctors
Our office has worked with more than 1000 persons who have Chronic Fatigue Syndrome (CFS), including several hundred with severe CFS.
Richard Podell, M.D., Medical Director has lectured about Chronic Fatigue Syndrome to many professional and consumer support groups. He has written articles for Redbook, Family Circle, and Bottom Line Health. A clinical professor at Robert Wood Johnson Medical School, Dr. Podell was Principal Investigator for one of the test clinical trials for a Food and Drug Administration approved study of Ampligen, an experimental drug for CFS.
In 2002, the New Jersey Chronic Fatigue Syndrome Association gave Dr. Podell their Medical Achievement Award. Dr. Podell has served on the expert committee on CFS for the New Jersey Academy of Medicine and also for the New Jersey State Department of Health. This group published a Medical textbook on the diagnosis and treatment of CFS. Dr. Podell also wrote a book on Chronic Fatigue titled “Doctor Why Am I So Tired?”. He has served as a medical expert on Chronic Fatigue Syndrome in both New Jersey State and Federal Courts.
Philosophy: We seek to combine the best of standard drug therapies with natural support for the body’s own healing systems. Since drug treatments, while useful, only partly control symptoms, we try to aid the body’s natural abilities to heal. We evaluate the status of the important healing systems, and remove obstacles to their function. This perspective has a formal name: Functional Medicine.
Many Chronic Fatigue Syndrome doctors believe that a holistic or functional medicine approach adds value to standard therapies by focusing on the body's natural healing systems and their crucial role in resisting and reversing illness. The unstated assumption is that mind and body function quite separately as if each organ within us acts largely on its own. However, current science tells a very different story.
Mind and body organs and systems act on each other. There is a complex web of hormonal, metabolic and biochemical inter-relations. At a deep level, even such distant organs as the brain, endocrine glands, immune system, gut, and liver coordinate their functions-- almost as if they were one.
Functional Medicine, we believe, creates added opportunities for healing. This holistic, complementary or alternative approach focuses on ways to strengthen the body’s own natural healing systems. Much research suggests that better function for any one part of the healing web also acts to strengthen other parts of the system.
Chronic Fatigue Syndrome Doctors
Until fairly recently, many physicians believed that Chronic Fatigue Syndrome was in the same class of illness as psychologically-based anxiety or depression. Some still believe that, but almost all CFS experts are now firmly convinced that Chronic Fatigue Syndrome is a physical illness. CFS doctors agree that Chronic Fatigue Syndrome’s cause and mechanism remain largely mysterious. When we examine a large number of CFS patients, we find an increased rate of abnormalities of the immune system and metabolism. However, these same abnormalities can also be found among some individuals who don’t have CFS or even those who are healthy. So, we don’t yet have a diagnostic lab test that reliably says who has CFS and who does not.
Many or most cases of Chronic Fatigue Syndrome appear to begin with a viral illness. However, bacterial infections, environmental toxins, and/or emotional distress may also be triggers. We are not yet sure whether those who are chronically ill have a continuing infection, or whether immune system, metabolic and neural damage perpetuates itself in other ways.
Confirming The Diagnosis of Chronic Fatigue Syndrome Is Crucial
Dozens of common ailments can also cause fatigue. Therefore, a main focus of our first long new-patient visit is to be sure that we haven’t missed potential alternative causes of your illness. That’s why we ask you to complete our very detailed case history questionnaire and send us copies of prior lab reports.
Chronic Fatigue Syndrome Treatments
Unlike most illness for which there are many approved treatments, no pharmaceutical company has yet sought the Food and Drug Administration’s approval for a medicine for CFS. The two best studied treatments are Valcyte, an anti-viral drug that is FDA approved to treat CMV virus; and also Ampligen, an anti-viral drug that is not yet FDA approved.
Unlike bacterial pneumonia, which we can often cure with penicillin, we do not have a “magic bullet” to reverse CFS. Nevertheless, there is much we can do to help people with CFS feel and function better.
The first step is usually to regain a sense of control by reducing the disruptive symptoms that often complicate this disease. These include secondary pain, poor sleep, recurring infections, and secondary depression, nutritional deficiencies, thyroid and/or adrenal imbalance. At the same time, work to improve the natural healing systems that we normally rely on to overcome illness. It is of great practical important to identify and remove obstacles to the function of these natural healing systems.
We discuss our approach to natural healing in the section titled Eight vicious cycles that block Chronic Fatigue Syndrome healing.
Chronic Fatigue Syndrome doctors also often recommend the following important natural therapies:
A slowly graded program of gradual increasing exercise using the Goldilocks Principle–not too much, not too little, but just the right amount, and a specialized form of practical psychological support emphasizing coping skills rather than “in depth” psychology. This is called cognitive behavioral therapy (CBT)
The “goldilocks” exercise and the CBT approach definitely make a difference for most CFS patients. They should be part of almost every person’s treatment program. We discuss these further below in the section Functional Medicine Applications.
Innovative Chronic Fatigue Syndrome Treatments
VALCYTE is an anti-viral drug that the FDA has approved to treat cytomegalovirus (CMV). Usually Valcyte is given to persons with AIDS or who have received organ transplants. However, Valcyte seems likely to also be effective for Epstein-Barr Virus (EBV) and for Herpes Virus 6 (HHV-6). Chronic fatigue syndrome physicians suspect that EBV and/or HHV-6 may account for a substantial proportion of cases of chronic fatigue syndrome.
PROVIGIL is a fairly new drug used mainly to treat narcolepsy, a central nervous system condition that causes profound sleepiness. A significant minority of CFS patients feel more alert with Provigil. A smaller number also report that their exercise tolerance improves. Provigil is relatively safe. Its positive effects are felt within hours, so it’s certainly worth a brief trial.
BLOOD PRESSURE RAISING STRATEGIES: Many people with CFS have low blood pressure and/or rapid heart rate. These worsen if they stand too long. (We call these “orthostatic” symptoms.) This occurs in part because the volume of blood in circulation is too low. Measures designed to increase blood volume or raise blood pressure often help fatigue and reduce orthostatic symptoms.
We have two main options for chronic fatigue syndrome low blood pressure:
- Increasing salt and water intake – We can do this by diet, and taking extra salt pills if needed. Or we can augment salt retaining with the medicine Florinef) or with the herb licorice root. Both methods require taking extra potassium.
- Raising blood pressure:
- ProAmatine, a drug that raises blood pressure
- Tyrosine, an amino acid
- Beta blocker drugs are sometimes useful for increasing blood pressure, even though for most people they are used to lower blood pressure
- Ritalin or Dexedrine can raise blood pressure
- Epogen/Procrit, an injection that stimulates the growth of red blood cells
We have also seen three male patients whose low blood pressure improves for several days after taking Viagra. This has not been reported previously. As with beta blockers, Viagra normally lowers blood pressure, but our patients found the opposite.
AMPLIGEN is an experimental intravenous drug with anti viral and metabolism enhancing qualities. Dr. Podell was a Principal Investigator for the Food and Drug Administration approved double blind research program on Ampligen. Ampligen’s application for approval is pending before the FDA. Ampligen is not yet on the market in the U.S. In 2010 the FDA asked that an additional double blind study be done before considering Ampligen for approval. Therefore, for now, Ampligen is not a treatment option.
Additional Strategies to Strengthen Chronic Fatigue Syndrome’s Healing Systems
- Test for essential fatty acid deficiencies and supplement when appropriate.
- Evaluate the methylation/SAMe/folic acid/vitamin B12 pathways, which are essential for effective brain and liver function.
- Analyze which vitamins and minerals are sub-optimal and supplement when appropriate.
- Support the mitochondria’s ability to manufacture ATP energy molecules. Options include: Riboflavin, Lipoic Acid, Enada (NADH) phosphatidyl serine, L-Carnitine, Acetyl-L-Carnitine, glutathione, CDP-choline, Coenzyme Q, and “adaptogenic” herbs.
- Assess the quality of digestion and the gut’s bacterial and yeast balance.
- Measure the strengths and weaknesses of the liver’s detoxification pathways.
- Biomechanical (body work) therapies: Effective therapeutic massage and physical therapy techniques for FMS muscle pain which are also known as Structural Integration, Janet Travell, M.D.-style Manual Trigger Point Therapy, Myofascial Release and Deep Connective Tissue Therapy.
- Trigger point injections can also help, as can chiropractic adjustment and a podiatrist’s evaluation of legs, feet and gait. Occasionally, acupuncture and laser therapies are useful.
- Energy Therapies: Reiki and magnets are sometimes reported as helpful. Currently, we are studying a system of extremely low dose electrical stimulation to calm down the pain pathways in the spine and the brain.
Hidden infections and Chronic Fatigue Syndrome: a Current Controversy
Many CFS doctors, especially in Europe, believe that persons with severe CFS may be ill because of unrecognized infections with atypical bacteria or viruses. These include mycoplasma, chlamydia, Lyme disease and HHV-6. These researchers claim beneficial results from long-term antibiotics.
Several double blind studies support these claims, but none of these studies, so far, have been large or well-designed enough for us to be sure. We continue to follow this research closely.
Links to Useful Chronic Fatigue Syndrome Websites
The CFIDS Association of America is the largest patient advocate and support group for chronic fatigue syndrome in the US.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis news service.
In addition to these websites on CFS, many Fibromyalgia websites are also of interest for people with chronic fatigue syndrome.