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.
Question: 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 [also called Human herpesvirus 4 or HHV-4] 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 FM, 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.
It is possible that they are in the same spectrum of disease, with the most predominant symptom relating to the termed condition.
If fatigue is predominant we call the disease Myalgic Encephalomyelitis (or Myalgic Encephalopathy) - M.E. is the abbreviation for both. It is also called Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).
If the provocative symptom is pain in muscle and joints, then we use the term Fibromyalgia (FMS).
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 or create 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 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. In immunological terms it has been shown that the Th1 and Th2 state is abnormal. 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 better in this symptom.
There is a cyclic nature to the disease. A patient one week will have less symptoms, but the following week will experience greater symptoms. A key to managing this illness is learning to recognize those cycles and if possible plan accordingly. The cycles do not seem to follow any known physiological patterns. However, symptoms do seem to worsen for women during their menstrual cycles but not due to estrogen or progesterone excretion.
Many patients will start out with CFS and later develop FMS - or vice versa. 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.
After a full examination - which unfortunately is long and arduous, in fact the process may add to the patient’s condition - the second visit hopefully is less strenuous because we review the findings of the first visit, review item by item the blood test results and encourage the patient, if they desire, to bring a friend or family member to listen to the discussion. Some family members or friends are skeptical about the patient’s symptoms. So this gives substance to the patient’s problem. The treatment is according to each patient’s health needs. But there is a common thread of treatment.
Over 12 years approximately, I developed a formula given by injection weekly to help alleviate symptoms over time. This formula method is NOT a cure, but it does help significantly over time. Many of my patients have been able to resume a significant portion of their lives, including returning to work - some returning to work after having been bedridden.
The formula contains:
Kutapressin (now replaced by Hepapressin or NexavirR),
And trace elements.
It works very slowly, often taking 8 to 12 weeks before the first signs of improvement begin. Other physicians use some of the ingredients I use to help treat CFS/FMS, but I have found that combining these ingredients into a single injection and consistently using this protocol has given tremendous improvement for most patients.
My studies over the years have found a 60% to 70% improvement rate with use of the formula, compared to only about 30% using individual items from the formula list as in the original Kutapressin work in Texas. [Editor’s note: For more information about Dr. Enlander’s formula, please visit his website, or contact his online assistant at DukeJS@aol.com].
In conjunction with the weekly injection, we use a capsule containing Glutathione, L-cystine, ascorbic acid, and trace selenium. The capsule is Immunoprop and is taken twice a day. Ablassi in Barcelona, Spain, found that an electrolyte mixture Recuperation (Recup) helped many patients. We use an equivalent, Lectrolyte, two teaspoons twice daily.
Aside from the standard formula above, there are many symptoms that need to be addressed. First, we determine symptoms or abnormalities that are not related to CFS/FMS and take care of that separately. Then we begin to treat the remaining symptoms, such as insomnia, poor sleep, neuro-cognitive difficulties, and pain.
Let me state clearly here that, while many patients develop depression and anxiety, I firmly believe that these are a secondary response to the illness. Therefore, we treat depression as needed, but as a secondary depression caused by the disease.
Question: What are your recommendations for CFS/FM patients regarding the important issues of unrefreshing sleep, pain, low energy, depression, brain fog, diet and supplementation needs, etc?
Dr. Enlander: My recommendations are as follows.
• Sleep (unrestful sleep; insomnia). Good, deep, refreshing sleep is a major key to helping other symptoms of CFS/FMS. Most patients have sleep disturbances to their normal cycle. This includes falling asleep, staying asleep, and quality of that sleep. Sleep studies may be beneficial to determine sleep apnea, etc. For instance, I treat patients with sleep apnea with extreme caution regarding any type of sleep medication. If the patient’s breathing became obstructed or disrupted, a sleep medication could potentially worsen the condition.
I prescribe various medications and treatment plans to help improve sleep. I start the sleep adjustment with the least provocative substance that will not be habit-forming: diphenylhydramine. If that is not effective, I may use an older drug like Trazodone (deseryl) to help establish a more stabilized pattern of sleep. Or I may use drugs such as Ambien, Sonata, Klonopin, Flexeril, Zanaflex and others. I am cautious about long-term use of certain drugs due to their addictive or dependent qualities, and will short-term swap medication to lessen the habit forming effect.
Lately we have used a new sleep medicine - sodium oxybate, or Xyrem (Jazz Labs Palo Alto). It has a fast onset and there is no dependency. I often caution patients about using alternative methods or over-the-counter sleep aids. I am not opposed to all such substances, but I feel strongly that as your doctor I need to know ALL medicines/substances you are taking, as there can easily be a cross-reaction and damage to the body can occur.
Substances bought over the counter for sleep and other symptoms can in fact provide the opposite effects. I may also prescribe a muscle-relaxant to help relax the muscles to promote better sleep. I try to help the patient establish a routine that will aid in establishing a sleep goal.
• Pain (drugs prescribed, etc.). I recognize the seriousness of the pain CFS/FMS patients suffer and treat accordingly. I am very consciously aware of the dependency that many pain medicines can contribute to, so I follow this closely with each patient. Pain meds often used are both short-term and long-term. Patients have different pain levels, thus requiring different choices of medications.
Stress reduction is very helpful to CFS/FMS patients. I ask my patients to consider therapies such as deep breathing exercises, muscle relaxation therapies, biofeedback and meditation. These methods often help manage chronic pain.
• Low energy (combating fatigue). One of the ingredients in the formula that I use for patients is glutathione. Many patients find this helpful for increasing energy levels. Other drugs I use may also have side benefits of increasing energy. Neurontin is such a drug. This is an anti-seizure medication that currently has uses in sleep issues, pain issues, as well as helping with energy levels. Antidepressants are used for many reasons besides depression, and these may often help elevate energy levels. If a patient does suffer from depression issues, certain antidepressants may help alleviate any fatigue issues related to the depression. Elavil is one older antidepressant drug that is often helpful for low energy, as well as sleeplessness.
Again, I like to see very, very slow graded exercise as a means to increasing energy levels. I also find that rising in the morning hours often helps a patient’s energy levels more than awakening in the afternoon. I also believe that sunshine helps the body to rejuvenate somewhat.
• Depression (drugs prescribed, etc.). CFS/FMS patients are very sensitive to drugs that treat depression and anxiety, so I carefully discuss with the patient the best possible choices and side effects. The best treatment medication may take a few tries with different choices. For instance, a patient may need a more sedative-like antidepressant (e.g., Serzone, Celexa) or perhaps one such as Wellbutrin SR that creates the opposite effect of a more stimulant reaction. Many CFS/FMS patients cannot tolerate high doses of these particular medications and respond much better to low doses. Most responses take 3 to 6 weeks to be realized, though.
• Brain fog (inability to concentrate, memory problems, etc.). Again, I feel strongly that my formula injection helps improve this symptom over time. I may also have to use certain drugs to help the brain better focus. Additionally, I have found that a combination of glutathione, l-cystine and selenium can be helpful with concentration loss and short-term memory loss. Phosphoserine and Cat’s claw have been suggested as being helpful; these are incorporated in a capsule Catapult.
Patients tend to have a loss of short term memory and concentration loss. I encourage the patient to perform memory-enhancing exercises to help their mind focus and stay sharp. Good examples are crossword puzzles, free word games provided by online services, and even TV shows such as Jeopardy! I urge patients to continue to challenge their minds, even though I realize it is often difficult because of the brain fog that many CFS/FMS patients succumb to.
• Diet (foods to eliminate, excitotoxins, etc.).Many patients do indeed appear to help themselves by eliminating certain foods. Patients seem to come to these foods and substances by either allergy testing or sample diet reactions. There are many books that can be used as a self-help method to follow. I like for patients to maintain a healthy balanced diet low in animal fat and high in fiber with abundant fresh fruits and vegetables. The treatment that I use to help in this area is a product called Immunoprop. I believe it helps patients in better nutrition for the body, as well as addressing other symptoms.
Certain patients are sensitive to milk products so a trial of milk free diet may be helpful. After six weeks we review the finding. Similarly, some patients are yeast sensitive, and a yeast exclusion diet is similarly reviewed.
• Supplementation (how to address any deficiencies). The formula injection that I use in treatment provides many amino acids along with minerals and vitamins. With testing results, I may also include additional substances such as potassium, calcium, etc. I find that pills often are not absorbed well, so I prefer to use the injection for better absorption.
I am not opposed to discussing other substances that might be of particular help. However, I want patients to recognize that supplements and herbal medicines have many potential side effects and toxic reactions as standard drug therapy. In fact, the dangers increase due to the lack of standards, doses and quality for ingredients. Vitamin E has been recommended in low doses to enhance the fatty acids in the cell membrane, and promote cell function.
• Other issues (immune dysfunction, cognitive difficulties, etc.). First, let me say that I believe a positive attitude is a key factor in those patients who improve the fastest. Patients must seek out physicians who are willing to consider their problem as a medical condition and not a psychiatric one.
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 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% 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.
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 complementary 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 the safety of my patient being the first criterion.
Question: Are you currently involved in any research studies?
Dr. Enlander: Presently we are involved in a study with Dr. Jonathan Kerr in London relating to the RNA genome in ME/CFS. We believe that there is a predisposition in the genome towards susceptibility in the disease.
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. Procrit did not relieve the ME/CFS symptoms in our experience. 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 over CBT (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 CFS test Kenny De Meirleir, MD, made known to the public recently. I am also interested in furthering the research over 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 [see the footnote for ordering information], 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 CBT 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].
My largest concern with 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.
For further information, visit Dr. Enlander’s web site: http://www.enlander.com/main.html. Dr. Enlander’s books for patients and doctors - CFS Handbook and Fibromyalgia Questions and Answers - are available through his website or office for $18.00 post paid. The CFS Handbook is updated periodically as new information becomes available. Dr. Enlander’s online assistant may be contacted at DukeJS@aol.com, regarding specific information about the formula injection Dr. Enlander uses to treat his patients.
Note: This information has not been evaluated by the FDA. It is not intended to prevent, diagnose, treat, or cure any illness, condition, or disease. It is very important that you make no change in your personal healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.