Update on the Treatment of Chronic Fatigue Syndrome and Fibromyalgia

11-08-2006:- Derek Enlander, MD, is originally from Belfast, Ireland, and is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is presently in private practice in New York where he sees CFS and FM patients, is on the faculty of Mt. Sinai Medical Center in New York City, and serves as President of the Israel Medical Research Foundation.

Included in this article is Dr. Enlander’s advice on treating common CFS and Fibromyalgia related syndromes such as fatigue, pain, and brain fog, as well as information about a formula he has developed to help treat CFS and Fibromyalgia symptoms.

Question: Dr. Enlander, when did you first become aware of Chronic Fatigue Syndrome and Fibromyalgia as valid illnesses with real symptoms (what were the circumstances)?

Dr. Enlander: I originally came to the United States to accept a one-year fellowship at Stanford University. My primary research subject was the relationship of Epstein-Barr Virus to cancer. I had studied virology with Lannette (the father figure of modern clinical virology) in his Lab in Berkeley. While there, I performed early scanning electron microscopy on cell surface changes in herpes virus infection. I came to New York as Assistant Professor at Columbia University and then Associate Director of Nuclear Medicine at New York University. I now have a private practice in both Manhattan and Long Island, and am on the faculty of Mt. Sinai Medical Center. Patients fly from around the world to my office regarding this illness. The magnitude of this illness is far-reaching and worldwide.

During my fellowship at Stanford many years ago, I made a return visit to Belfast. I was asked by a childhood friend to help him in a then virtually unknown condition, Myalgic Encephalomyelitis (ME). This is more commonly known in the United States as CFS or Chronic Immune Dysfunction Syndrome (CFIDS). The more I researched this illness, the more interested I became. It had a direct relationship with my field of interest in Herpes Virus. I was completely intrigued by this illness due to its highly unusual effects on patients; its lack of consistency, and seemingly affecting so many aspects of the body; and the lack of objective testing evidence when clearly these patients were so very ill. I especially was intrigued by the dismissal of this illness by other physicians as a mental condition, when clearly these patients suffered from physical illness. A large number of patients were affected, a number far greater than I at first realized.

Question: What are the most common factors for these illnesses - why do you think so many CFS patients also have Fibromyalgia, and vice-versa?

Dr. Enlander: I do believe that CFS and FMS (Fibromyalgia Syndrome) are related illnesses. There is commonality of symptoms between them. However, I don’t think we as a society or medical community are really sure enough yet what the common factors are. So far, the illness appears to be provoked in a number of ways and it is difficult to separate and assign specific symptoms to specific causes, creating subgroups within the CFS/FMS community.

We are aware, for instance, that a person involved in a car accident may develop FMS, and some other trauma may provoke the symptoms to a first time flare-up. With CFS, some patients are quick onset with viral-like symptoms similar to the flu. Others begin as a very slow onset that can take years to really develop to their low plateau level. Diagnosing CFS requires a 6-month time frame of fatigue and symptoms. These symptoms should be of a new nature, such as unremitting headaches, sore throat, fever-like flu feeling, sleep disruption, muscle aches and pains and cognitive difficulties. This illness is a very debilitating and complex disorder.

What I do believe is that whatever initiates the beginning of the illness then directly affects the immune system into an upregulated or a deregulated condition. The body, trying to heal itself and return to a natural balance, seems to constantly be adjusting to find that balance. I believe that is why over time we begin to find small changes, for example, in thyroid function, hormones, etc. We are unsure why one person experiences the longevity of the viral flu symptoms and others deal with it at only sporadic times. Some patients face serious neuro-cognitive symptoms, while others fare lighter in this symptom. Or better yet, why one patient one week will have few signs of one symptom, but the following week will experience the symptom significantly.

One thing I am sure of with this illness is that it has cycles to it. A key to managing this illness is learning to recognize those cycle times and behave accordingly. The cycles do not seem to follow any known physiological patterns. However, symptoms do seem to worsen for women during their menstrual cycles.

Many patients will start out with CFS and later develop FMS. Some just develop FMS, and diagnosis criteria for FMS are slightly different. A tender point test is given by the physician, with 11 of 18 tender points a criteria factor for the diagnosis.

At this point in time, our medical knowledge does not provide us with enough iron-clad evidence to decide whose body does what and why. We keep finding small pieces to the puzzle, but are still trying to see the whole picture. We try to recognize in each patient some common symptoms (after eliminating all other possibilities for illness) as set out in medical standards, and treat accordingly.

Question: Do you have a standardized treatment protocol for your CFS/FM patients?

Dr. Enlander: I hate to say I have a standard treatment because each patient is an individual with various symptoms and levels of the illness.

My first line of treatment is to LISTEN TO THE PATIENT. I cannot express this strongly enough. Most patients have gone through many doctors who knew little of the illness, and in some ways have done harm to patients by their lack of belief, knowledge, and support. It is very important to me to establish a trust with my patient.

I want patients to recognize that there are often other unusual symptoms that may occur in CFS. These might include abdominal pain, alcohol intolerance (avoid alcohol and medication use at all times), bloating, chest pains, chronic cough, diarrhea and other gastrointestinal situations, dizziness and loss of balance, dry eyes or mouth, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, shortness of breath, peculiar skin sensations, tingling sensations, pins and needles, creeping sensation under the skin (feels as if an ant is crawling under the skin). In some patients, the inability to exercise may cause weight gain, as well as medication causes. Other patients may experience significant weight loss.

However, I want to seriously caution patients to not assume any symptom is simply part of CFS/FMS. This would be a grave error that could cost a patient their life. For instance, ALWAYS check out chest pains with a physician immediately. While FMS trigger points can be a cause for chest pain, it is just as likely you could be experiencing heart trouble. Never assume - check with your doctor!

Question: What is your recommendation regarding exercise for FM and CFS patients?

Dr. Enlander: I consider exercise from different points of view with FM and CFS.

CFS patients�?prominent symptom is fatigue. This word is not truly descriptive of what these patients feel. When we use the word fatigue, the average person typically thinks tired from activities such as work, physical exertion, or lack of sleep.

CFS patients feel a different type of "fatigue." At times, they feel they cannot lift an arm or leg without significant effort. Their energy base is depleted. Therefore, I suggest my CFS patients do only slow, very graded exercise. Exercise is a very slow and tedious but necessary aspect of recovering to a more productive level of functioning.

If CFS patients overdo exercise or any physical activity, immediate repercussions typically occur. At times, CFS patients do have spurts of energy and typically overdo because suddenly they can do things. One of the hardest obstacles to learn with CFS is to find balance in all things. Patients walk a fine line regarding exercise and physical exertion. CFS patients have relapses that often last for several days before they recover. I tell patients to follow this rule: "only do 50 percent of what you think you can do."

I prefer my CFS patients to begin with stretching exercises, then begin walking perhaps a block or to the end of their driveway and back if necessary. Walking can be done at their own pace, place and distance, so as to not overtax their bodies. Then, very slowly progress to 2 minutes twice a day with exercise that is not of a strenuous nature, but include something different.

There are many methods of exercise available today and one must choose something they enjoy doing. A stationery bicycle is a good choice once a patient reaches this level. It allows you to work your arms as well as your legs, but your balance is better served here as you progress in pedaling at your own speed. It is often difficult for some CFS patients to use a treadmill, as balance and continuous speed of the treadmill will make them fall. The type of exercise therefore depends on each individual patient and their physical abilities. I also like for the patient to choose an exercise that they prefer.

I, however, do not want my patients in an aerobic class. I feel this causes considerable damage to CFS patients. This is often difficult for the patient to accept on a long-term basis, as I find that most CFS patients were very active prior to falling ill with CFS. Once you have very gradually worked yourself up to the proper levels, one might find benefit in a very low-grade aerobic type class, although yoga, tai chi and similar exercises might be best.

For FMS, patients�?prominent symptom is pain. Therefore, some exercise can help relieve some of this pain, but only done in slow, graded methods. I follow a similar exercise for FMS patients as I do in CFS patients, as I believe the illnesses are related. They share similar symptoms, with either pain or fatigue being the leading factor. However, with FMS I believe that a patient might benefit better from stretching exercises, building up slowly. Then progress to mild exercise efforts like water aerobics. Temperature of the water for water aerobics is essential as well. FMS patients usually need water warmer than the average person. Again, to overdo will bring very painful muscle cramping, so this exercise must be done very gradually.

With FMS patients I often find using some complimentary services to be helpful when exercising. The right type of massage done on a regular basis, along with drinking lots of water can help lessen the pain of the muscle. Our bodies need water, but most especially CFS and FMS bodies. FMS bodies tend to significantly tighten up their muscles after exercise, and particularly during periods of stress. Deep tissue or trigger point massage is the eventual goal for an FMS patient, but most patients need to be started with a much lighter touch in the beginning and work up to the desired goal. Again, the key is balance in all therapies.

I will add that I am very open to new treatment discussions and new courses of studies. I research this illness considerably and am open to other possible treatments, with safety of my patient being the first criteria.

Question: Are you currently involved in any research studies?

Dr. Enlander: I have participated in a number of research studies over the years, and do some in-house with the assistance of other professionals. Recently I have been following more and more patients regarding the low blood volume issue. Low dose Naltraxone LDN and cytokine evolution in these diseases are current research topics that we are presently working on.

I often assist other entities doing the research, but I prefer to participate in a quiet manner rather than announcing a new study. I often help patients participate in research projects with pharmaceutical companies.

I often find funding for CFS/FMS research to be a carefully controlled and cliquish doling out of money. It seems often research grants cover the same old territory for years. I would like to see some new names and new opportunities granted for furthering research. How many more studies do we need of cognitive behavioral therapy, depression, and somatoform issues?

Question: What do you think are the most promising recent developments in CFS and FM research?

Dr. Enlander: I am interested in following the Kenny De Meirleir, MD’s CFS test -made known to the public recently. I am also interested in furthering the research of the blood volume issue, as well as cytokine secretion and their relationship to these conditions.

Question: What do you think the future looks like for CFS and FM patients? Are we moving forward in dealing with these diseases - as patients, practitioners, and as a society?

Dr. Enlander: I am concerned about the lack of true medical understanding by most doctors regarding CFS/FMS. Recently, I have written several letters to the British Medical Journal and the Cleveland Clinic Journal. My letters were published in response to previous articles published, which in my opinion shifted medical thinking away from the importance of CFS/FMS. In an ABC-TV appearance, I emphasized the fact that patients are not imagining their disease. In my lectures and my book, The CFS Handbook, I try to communicate the facts. I still continue to hear horrific stories of how patients are treated with this illness and the complete lack of knowledge of physicians.

The worst is that physicians shy away from learning more about this illness.

I believe every few years there are shifts in opinions on CFS/FMS. I see a growing trend, unfortunately, once again to try to attach a more psychiatric viewpoint and treatment plan to patients with the illness. The continued push to cognitive behavioral therapy and psychiatric means, by both much of the medical establishment and the insurance companies, concerns me.

I feel that more and more individuals are becoming aware of the illness, but the name of CFIDS is very undermining to the true nature of the illness. I think positive recognition is happening in the public, and patients are being cheered for their accomplishments - as we’ve seen for [Olympic speed skater Amy Peterson] and other athletes suffering with CFIDS.

My largest concern regarding the future of CFS/FMS is attracting the funding needed to really get to the root of this illness. As a society, we need to accept only the best and brightest research models, and push for solid, scientific studies that can be replicated. We definitely need an attitude adjustment to the current approaches.

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