There is no proven or reliable cure for Chronic Fatigue Syndrome (CFS); studies have found that patients with the best chance for improvement are those who remain as active as possible without overactivity. Overexercise produces relapse, and excess stress likewise produces relapse. Positive attitude is important to attempt to have some control over the course of this disorder. Patients must seek physicians who are willing to consider the problem as a medical condition and not a psychiatric condition.
Contrary to a number of doctors who pat the patient on the back and refer them to a psychiatrist because they think the patient's condition is caused by depression, this is not a primary depression. Depression, if present, is caused by the chronic nature of the disease and is secondary, in the same manner that depression occurs in any long-term illness.
A patient should be very wary if the physician recommends excessive and expensive treatments such as intravenous drips that may have serious adverse effects on the kidneys and have no proven benefits. The problem is that we [physicians] do not know the mechanism of this disease; many of us believe it may be a dysfunction of the immune system.
Kutapressin: An Immune System Adjuvant
Based on the theory that the immune system is dysfunctional in CFS, researchers in Texas some ten years ago rediscovered an immune system adjuvant derived from porcine liver, called kutapressin. Kutapressin is an amino acid complex that was first used for Herpes Zoster, a virus that causes chicken pox and shingles, and also to treat chronic acne. Kutapressin seems to activate the immune system.
Based on the possibility that CFS patients have a dysfunction of the immune system, the researchers considered it a possibility that kutapressin may help CFS patients. About 30% of patients studied experienced improvement in their trial of kutapressin, but 70% of patients showed little reaction. We considered methods of improving the ratio of symptom improvement by adding magnesium sulphate, folic acid, vitamin B12, Calphosan and glutathione to the injection. We improved the efficacy of the weekly injection for patients to 67%.
The single weekly injection we developed contains: Kutapressin, Glutathione, Magnesium sulphate, Methyl Cyanocobalamin, Folic acid, Calphosan, and trace elements.
Before injection treatment, the patient is tested with a test dose 0.2ml to rule out hypersensitivity. If there is a hypersensitive reaction in the form of swelling or any other adverse reaction to the injection, then the components of the injection are separately injected as test doses in each arm at weekly intervals to determine the sensitizing component(s).
We use this oral tablet in combination with the kutapressin complex injection. The Immunoprop contains 250 mg glutathione, l-cystine , Selenium and sodium ascorbate. It is believed to activate the immune system and reduce brain fog, and it can be taken up to three times a day.
Some patients experience profound fatigue following even modest exercise, and it is the primary factor in the low-activity levels in these patients. A recent study found, however, that 75% of patients who were able to engage in exercise, particularly aerobic exercise, reported improvement in fatigue, normal functioning, and fitness after a year. It is important to exercise slowly without overexercising to prevent relapse. Patients should gradually increase exercise by 10% per week, taking care to avoid overexertion. An incremental program of activity, beginning with as little as three to five minutes of moderate exercise a day is suggested, although capacity varies greatly among CFS sufferers.
Setbacks may occur, but patients should not be discouraged. Rather, they should experiment with various forms of physical activity that suit their individual energy level. Tai chi – an Eastern meditation exercise, has been of help for many patients.
CFS patients should maintain a healthy diet low in animal fat and high in fiber, abundant fresh fruits and vegetables. Some fats may be beneficial, however. One study found that 85% of patients with CFS experienced improvement using black current and fish oils, however this study has not confirmed by others.
These oils contain a polyunsaturated fatty acid known as gamma linolenic acid, which may block the release of cytokines and prostaglandins that play major destructive roles in inflammatory diseases. (Olive oil may have similar benefits and, in any case, there is no downside in using it for cooking.) For those with demonstrated low blood pressure, increasing the amount of salt in the diet may be helpful.
Stress Reduction Techniques
A number of relaxation techniques are available, including deep breathing exercises, muscle relaxation techniques, meditation, hypnosis, biofeedback, and massage therapy. One panel of experts concluded that a number of relaxation and stress-reduction techniques were helpful in managing chronic pain. They also can help relieve the stress associated with this disease. They are not useful, however, as a primary treatment for CFS.
The problem with this disease is that the patient has a normal appearance – there is no outward disfigurement, no massive rash – in fact, a number of patients are told how well they look. This is possibly the worst thing they could be told as they feel so wretched inside.
The healthy outward appearance sometimes makes the friend, co-worker or family member question the severity of the disease, and consider that that patient only imagines they are unwell. Strong, supportive relationships with family and friends are a crucial factor in the overall improvement of CFS patients. If there are doubts about the severity or validity of the disease, have the doubter contact the treating physician for more information.
Cognitive therapy has been portrayed as a prime therapy in a recent report by the Royal College of Psychiatry in England. I believe that the psychiatric element is overplayed in CFS, but in the interests of completeness of information, their finding must be included. They claim that cognitive therapy has substantial benefits for enhancing patients' beliefs in their own abilities for dealing with stressful situations and managing CFS and to change any distorted perceptions they may have.
Some patients are involved in unsatisfactory relationships at work or at home and have distorted attitudes of the world and of themselves. It is claimed that through this therapy CFS patients can think differently about their fatigue. Cognitive therapy is particularly helpful in defining and setting limits — behaviors that are extremely important for CFS patients. One study found that patients who felt the least control over symptoms reported more severe and chronic fatigue.
Using specific tasks and self-observation, patients gradually shift their fixed ideas that they are helpless against the fatigue that dominates their lives to the perception that fatigue is only one negative and, to a degree, a manageable experience among many positive ones. Cognitive therapy may be expensive and not covered by insurance, although it is usually of short duration — typically six to twenty one-hour sessions, plus homework, which usually includes attempting a task that the patient has avoided because of negative thinking.
Homework also may include keeping an energy diary, which can be a key component of CFS cognitive therapy. The diary serves as a general guide for setting limits and planning activities. The patient uses the diary to track any factors, such as a job or a relationship, which may be making the fatigue [or the perception of it] worse or better. It is also used to track the times of day when energy levels are at their highest and lowest peaks and adjust schedules accordingly.
For instance, the patient may plan low-energy times for taking a nap and high-energy times for planning important activities. Developing fairly rigid daily routines around probable energy spurts or drops may help establish a more predictable pattern. It should be noted, however, that energy levels will most likely never be entirely predictable; patients must also be prepared to adapt to energy variations and respond accordingly.
Flexibility is important. Instead of a long nap, for instance, patients may need between five to ten-minute rest periods every hour or more, during which time relaxation or meditation methods are useful. Cognitive therapy teaches patients how to prioritize their responsibilities, dropping some of the less critical tasks or delegating them to others. Limits should be designed to keep both mental and physical stress within a manageable framework so that forcing themselves into situations in which they are likely to fail does not discourage patients.
As part of the therapeutic process, patients learn to adapt even to impaired concentration, a common CFS problem. For example, the patient learns to choose activities that are appealing, that will focus attention, and will help increase alertness. CFS patients are taught to request instructions that are given as concise simple statements, and to keep external distractions, such as music or talking, to a minimum.
In one study comparing patients receiving standard treatment with those receiving the same treatment plus cognitive therapy, 73% of the cognitive therapy group were spending less time in bed and functioning normally after a year, as opposed to only 27% of those who received standard therapy alone. In another study, 70% of patients improved significantly after six months of cognitive therapy, compared to 19% who used only relaxation techniques. Not all studies support the benefits of cognitive therapy; the skill of the therapist is very important in its success.
Psychoanalysis and other interpersonal psychological therapies, which are concerned with subconscious thoughts and early childhood memories, are not generally helpful for the patient with Chronic Fatigue Syndrome. It is important to note that even if CFS proves to have a specific organic cause, any mode which will benefit the patient and create a positive outlook is helpful and should be supported. Patients with other diseases who “give up” tend to deteriorate, and the reverse can be true for patients who mentally strive to improve.
Antidepressant and Antianxiety Drugs
Although there is depression frequently in CFS patients, this is a secondary depression due to the long term illness, and it is NOT the cause of the disease. As an accompanying problem, insomnia is often seen. Insomnia causes a vicious cycle without restorative rest. The antidepressant drug amitriptyline (Elavil) is known to relieve many of the symptoms of CFS, including sleeplessness and low energy levels.
Patients with CFS normally respond to much lower doses than those used to treat people with other disorders, and, in fact, many CFS patients cannot tolerate the higher doses commonly used to treat depression patients. Improvement in symptoms can take three to four weeks. Many researchers report that other antidepressant medications have also helped, including doxepin (Sinequan), desipramine (Norpramin), nortriptyline (Pamelor), clomipramine (Anafranil), and imipramine (Tofranil, Janimine).
Popular antidepressants known as selective serotonin-reuptake inhibitors (SSRIs), such as fluoxetine (Prozac), sertraline (Zoloft), and Paroxetine (Paxil), appear to have little value for CFS beyond treating any accompanying depression. It often takes several weeks for tricyclics to produce benefits. Common side effects of many antidepressants include dry mouth, restlessness, a slightly increased heart rate, and constipation.
Anxiety may frequently exist in CFS patients. Alprazolam (Xanax), an antianxiety drug, may be helpful especially at night when it is also helpful against insomnia, but unfortunately it can become addictive. St. John's Wort and SAM-e are over-the-counter herbal remedies for depression and anxiety, but do not be allayed by the herbal aspect, they are still powerful ‘drugs.’
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin or ibuprofen (Advil, Motrin), or acetaminophen (Tylenol) may relieve general aches or pains. CFS can cause persistent muscle and joint pain, and patients unfortunately may abuse over-the-counter medications. It is important to note that these NSAIDs can cause bleeding, and excessive use of acetaminophen has been associated with liver or kidney damage and even death. Patients with gastric ulcers should not take any pills without a physician’s recommendation.
If joint pain is not relieved with nonprescription painkillers, local injections of the anesthetic lidocaine are not usually helpful either. Light massage, stretching, hot and cold compresses, topical anesthetics, physical therapy, acupuncture, or light chiropractic treatment may help in some cases to alleviate tenderness or pain.
Spinal MRI and Myelograms
Spinal MRI are frequently used in medicine to determine abnormalities in the spinal cord , vertebrae or intervertebral discs. As there is no specific abnormality seen in CFS, one of the common uses is to exclude the presence of plaques seen in Multiple Sclerosis.
Myelograms are a different procedure involving the injection of a contrast medium into the cerebrospinal fluid, which is a painful procedure that frequently results in a prolonged headache afterwards. There are significant side effects from myelograms which must be discussed with the clinician.
David Nye, M.D., a well-known neurologist at the Mayo Health System, writes in a private correspondence, "…. how myelograms are currently being used to assess neurosurgical problems of this sort. MRIs of the cervical spine are used primarily for evaluation of cervical spine problems, with myelograms done occasionally if the MRI is confusing or equivocal. To be a surgical candidate, there needs to be not just cervical spinal stenosis but signal change within the cord at that level indicating myelopathy."
Arnold Chiari Malformation (ACM) Surgery
There was a fad in 1998-9 in pursuing a magic surgical cure after an article in the Wall Street Journal from a Mid West surgeon who claimed that the Arnold Chiari Malformation (ACM) was a primary cause of CFS and an operation on the base of the skull would relieve the pressure seen in ACM.
ACM causes a malformation in the region of the foramen magnum with herniation of the brain. The ACM procedure is a very dangerous operation where patients could be paralyzed for life and post-operative death is possible. Again I quote David Nye, M.D., of the Mayo Health System:
"I have stated my concern as a neurologist about this surgery before.
1) It doesn't make pathophysiological sense. What is the mechanism by which compression of the medulla or cervical spine causes cognitive difficulties, aching all over, or severe fatigue? We know what the symptoms of Arnold Chiari Malformation and cervical spinal stenosis with myelopathy are and they are not that similar to CFS or FMS. They should always produce neurologic exam abnormalities. CFS and FMS by themselves should not, with the exception of increased swaying on Romberg.
2) Over the years, I have had a number of FMS patients get MRIs for other problems, and none have had ACM or cervical myelopathy. We have fellowship-trained neuroradiologists reading our films who are not likely to miss these things.
3) These operations are associated with significant morbidity and occasional mortality. My feeling is that no one should be doing these operations until better data are available."
My feeling is that the ACM relationship is rare and a surgical cure is even more rare. The Chiari operation is therefore not in my opinion justified in the majority of cases of CFIDS and is fraught with considerable risk.
In summary, my thrust is toward immune system treatment with kutapressin complex and Immunoprop, a food supplement containing glutathione and l-cystine which supplement the immune system.
Editor's Note: To purchase a copy of Dr. Enlander's "The CFS Handbook" go to http://www.enlander.com/shop.html
© Derek Enlander, M.D., 2002-2003. NY CFS Assoc. Email: CFSny@aol.com. Reprinted with permission from the author.