Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
Dr. Podell is a clinical professor at New Jerseys Robert Wood Johnson Medical School with a special interests in Chronic Fatigue Syndrome/Fibromyalgia
Ask the Doctor: What Are Your Favorite Treatments for ME/CFS?
Answered by Dr. Richard Podell
Q:... What are your favorite treatments for ME/CFS?
A:... There are two levels of treatment. The one we understand best is how to deal with the complications of CFS including poor sleep, fibromyalgia pain, secondary depression, physical deconditioning, negative thinking, poor social support. An experienced and sympathetic doctor can do a lot of good in these areas with fairly standard and well accepted treatments. Specialists (of which there are only a handful) will likely do better than non-specialists.
The next level is how do we actually treat the underlying disease? As you know there are no approved treatments. We don't even know for sure if some, all or almost none of our patients have an active viral infection that could be treated with antivirals.
We have some possible but not proved partial treatments that I explore with selected patients.
These approaches include:
1. Antivirals, if Epstein Barr or HHV6 or CMV titers are very high. I prefer to use Valtrex or Famvir over Valcyte. Even though Valcyte is probably stronger, it's much more toxic and very expensive.
2. It might make sense to add an immune boosting product such as AHCC (a shiitake mushroom derivative) to the antiviral or to use this on its own. I've just started using this.
3. There's considerable evidence that there's inflammation in the brain in many CFS/ME patients.
There's a fair number of medicines and herbs with anti-inflammatory effects on glial immune cells of the brain. Low dose naltrexone is one. Potentially, the antibiotic Doxycyline is another. Various herbal products have anti-inflammatory effects e.g. curcumin, green tea, panax Ginseng and others.
Low dose naltrexone has two double blind studies supporting its use in fibromyalgia, but has not been tested for chronic fatigue. Doxycyline has no studies for CFS/ME or fibromyalgia but has some favorable studies with early rheumatoid arthritis. So far as I know none of the herbs have data on CFS/ME.
The virtue of low dose naltrexone and the herbs is that they are very safe.
Doxycyline is not perfect but as drugs go is relatively safe.
One anti-inflammatory that has one good double blind study supporting its use for CFS/ME is rituximab. But, this immune system suppressing agent is very toxic. Until we have further studies, I don't use it, although a few physicians are using it and claiming benefit, for example, Dr. Andreas Kogelnik in California.
Another approach is to improve the function of the energy pathways within mitochondria. A combination of pycnogenol and nicotimamide riboside improves mitochondrial function in rats. But human data is minimal. Again, these are likely to be safe.
We also screen for repairable metabolic abnormalities including the MTHFR folic acid mutation, which is quite common. We check for low coenzyme Q, low carnitine, magnesium, zinc and other nutritional metabolic factors. If abnormal we treat.
- Dr. Richard Podell
More Q & A's
Is there a secret to success with mind-body therapies?Answered by Dr. William Collinge, PhD, MPH
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Q: I have fibromyalgia and my family keeps giving me articles with patient success stories describing how much I could improve if I just worked harder on positive thinking and meditation, etc. I do think meditation helps me, but the fact is a lot of the time I’m still not up to doing family things. I feel like a failure and wonder if there’s some key to success.
A: The explosive growth of interest in mind/body medicine (meditation, relaxation, breath therapy, etc.*) has spawned a shift in our attitudes and beliefs about healing. However, in their enthusiasm to jump on the bandwagon, many popular books and magazines have fostered some erroneous beliefs which can lead to feelings of guilt, self-blame, confusion, despair, or hopelessness in people attempting to deal with CFS through a mind/body model. We can call this the "psychosocial morbidity" of mind/body medicine.
Avoiding the Perils of Mind/Body Medicine
Some doctors take a conservative approach, discouraging patients from using complementary therapies for fear of the psychosocial morbidity which may result if the patient doesn't do well or if their condition deteriorates. This approach has its own risks, however, namely that the person may miss a helpful service; or worse, may interpret the physician's attitude as suggesting a hopeless situation, leading to false despair. Other physicians support complementary therapies but help the patient to explore their expectations to make sure they are realistic.
The way to avoid the risks is to have a realistic understanding of the benefits and limits of mind/body medicine. I have found five key principles of mind/body medicine to be sources of trouble for many people. While many of these principles are based on well-intentioned ideas, we need to refine our ways of thinking - our "paradigms" - to be more in step with the psychology of healing. I will discuss these from the point of view of shifting from old to new paradigms.
The Meaning of Responsibility
You've probably heard these sayings: "Take responsibility for your health." "You are responsible for your health." "You are the creator of your health." The movement is away from the passive orientation ("Here, doctor, my health is none of my business, you take care of it"), and toward personal empowerment. Unfortunately some patients have followed this line of thinking to undesirable conclusions.
Old Paradigm: Responsibility Means Ultimate Control and Ultimate Blame.
Most of us grew up in a culture in which the word "responsibility" had a definite charge to it. As children we associated irresponsibility with misbehavior, punishment, blame, fault, shame and guilt. It was often used in the context of discipline or threats of discipline at home or school. This old idea of "taking responsibility" is usually oriented to self-judgment for one's past behavior.
By applying these attitudes to health, it's not difficult to see how some people conclude: Since I am responsible for my health, I must have given myself CFS. It's my fault, and it serves me right. I brought it on myself, and I must figure out why so I can correct it. Whether I get well depends on how hard I work on myself...
New Paradigm: Responsibility as Here and Now.
Rather than having a retrospective, punitive focus, responsibility is here and now, present tense. It has to do with how you live your life from this moment forward. In fact it's irresponsible to indulge in self-condemnation about the past. We probably would all have lived differently if we had known then what we know now, but that's not the case. Responsibility means responding here and now to the challenges you face, given the resources you have now, both inner and outer. This includes the intelligent use of medical treatment, as well as lifestyle change and self-help.
There can be value in looking at the past to see how we may have contributed to our vulnerability, especially if we engaged in risky or unhealthy behavior which continues today. This kind of looking within is done with an exploratory attitude toward life's lessons, not with a blameful attitude. If you remember the multicausal perspective, it's impossible to say to what extent past behavior contributed to the onset of CFS. To blame yourself about the past is a distraction from helping yourself now. The key is to shift from self-blame for the past to self-support for the present.
Hope refers to a positive expectancy about the future with the belief that something better than the current circumstances is possible. Its opposite is despair. In CFS this is especially important, since belief in recovery and in your ability to influence it are so central.
Old Paradigm: Statistical Odds Determine Hope.
In the old paradigm, hope is considered a matter of statistical odds. Most illnesses have a predictable course and statistics have been generated about the length and stages of illness. People who hope for some different outcome other than what the statistics suggest would be subject to accusations of "false hope." This is especially true, of course, with illnesses such as advanced cancers or HIV where the prognosis is grim--even though people have been known to defeat the odds.
In a sense it is good that we do not yet have statistics about recovery time in CFS, for if we did, people might tend to assume that those statistics applied to them as individuals.
New Paradigm: Hope Amid Uncertainty.
Hope can be separated from statistical odds. For example, a person may hope to defy the statistics, or that a cure will be discovered soon, while fully understanding the realistic nature of CFS. He can believe in the possibility of the unusual or unexpected.
Stories of people surviving normally fatal illnesses have inspired others to be hopeful where they may have not been before. And of course hope applies to dimensions other than just physical recovery. People can hope for healing emotionally, spiritually, and in relationships--even in a dying process.
In this paradigm, hope by its very nature cannot be false. However, it should exist alongside a realistic understanding of the challenge one faces. Hope can exist with unrealistic understanding as well as with realistic understanding.
Emotions and emotional expression are often difficult areas for both patients and helpers. Yet as we saw earlier, emotion plays an important role in host resistance and quality of life.
Old Paradigm: Emotions as "Positive or Negative."
Our anti-emotional culture promotes the idea that emotions can be divided into positive and negative. Those that feel good and are pleasant (joy, love, happiness) are labeled positive, and those that feel bad or unpleasant (fear, sadness, anger) are labeled negative.
Many people who embrace this paradigm believe that emotions are an adversary to be mastered or controlled. It goes something like this: Negative emotions are bad for your health and positive emotions are good for your health, so get negative emotions out of your life in order to promote your healing. Negative emotions go against having a positive mental attitude which is necessary for healing. Don't feel negative emotions!
Unfortunately this conditioning goes very deep and is often shared by health care providers. The result can be a subtle form of conspiracy between helper and patient in believing that there are "negative" emotions, and the patient then seeks to repress or suppress these authentic aspects of life.
New Paradigm: Emotion as Energy to be Expressed.
In the new paradigm, what's important is not attaching a positive or negative value to emotions. Rather it's emotional expression that influences health and quality of life. The need for expression applies to all emotions - anger, fear, and sadness as well as love and joy. Expression is health promoting, and suppression is health negating. As Dr. Lydia Temoshok, a leading mind/body researcher, stated when asked about the role of emotions in immunity, "If there is a hero in this, it's probably emotional expression."
Rather than thinking of emotions as positive or negative, they are simply one expression of your life energy as it flows through you. Imagine a beam of light shining through a prism that separates the light into a rainbow of colors. The prism is the person, the beam of light his life energy, and the rainbow represents the array of colors that energy can take, or the emotions. Placing your finger on the prism to block out certain colors will disturb the flow of light through the prism, and yield a distorted rainbow. Likewise, attempting to disown or deny any aspects of your emotional experience will disturb the flow of life energy through you, and adversely affect your body's healing processes.
Many people benefit from freer expression, even to the point of catharsis (e.g. crying, or pounding cushions with a tennis racket, if appropriate). They often find tremendous relief and new stores of energy through emotional release.
Positive Mental Attitude
Often people think of their mental attitude as a weapon for influencing the course of illness.
Old Paradigm: Feel Good and Optimistic at All Times.
Patients often have the belief that a positive mental attitude is health-promoting, and therefore they should strive at all times to display this. "Positive" is interpreted as meaning feeling only "positive emotions" and never allowing oneself to appear helpless, hopeless, or in despair (even if these feelings are actually present). Patients' efforts are often driven by a feeling of urgency and tension: "If I let down on my attitude, it will have dire consequences for my health." Often such beliefs are based on reading about links between depression and illness, or the healing power of laughter.
The old paradigm of the positive attitude usually goes hand in glove with the old paradigm of emotions. Of course there is value in maintaining an optimistic outlook.
The difficulty arises when belief in the "positive mental attitude" becomes the rationale for suppressing emotions, denying needs, refusing to acknowledge symptoms, or withholding requests for support. Many people misconstrue this belief to mean we should disregard these aspects which we associate with our "dark side." Yet the willingness to embrace and express these aspects of ourselves can play a vital part in healing.
New Paradigm: Positively Accept and Express All of Your Feelings.
A truly positive attitude means having a positive attitude toward all your emotions. This means a positive acknowledgment, a positive acceptance, and a positive expression. You can positively embrace all that you are, and not judge or disown any authentic aspects of your experience, including acknowledgment of those times when you feel hopelessness or despair. Through this positive acceptance of all aspects of yourself, your energy is not bound up in the suppression or repression of feelings and is free to help with healing.
Perhaps you can recall a time in the past when you had what you'd call a good cry. Maybe you remember the feeling of freshness or lightness that occurred afterwards. It may sound ironic, but the quickest way to free yourself from feelings of despair or hopelessness is by their full expression. Feelings are transitory if we allow them to be.
The Role of Self-Help
Patients often have the goal of mastering certain self-help techniques such as imagery or the relaxation response. They have read books or reports in which others attributed their recovery to these techniques, and have heard of research about the effects of such techniques on immunity.
They usually do not understand that when such studies report "significant" effects of a technique, this simply means that a measurable impact has occurred, even though that impact may or may not be of a magnitude to influence physical well-being. Such studies are important for instilling hope about the possible pathways to influence health, but they do not guarantee healing for a given patient.
Old Paradigm: Self-Help is Curative, and Depends on My Performance.
Difficulty arises from the belief that these techniques are themselves like a medical treatment. Hence the belief may be something like this:
I'm going to learn to visualize, practice it regularly, and if I do it well enough, it will be successful in ridding me of CFS. If I don't get better, it will be because I didn't do the techniques well enough or often enough.
The problem is the belief that the technique itself is curative, and that one's performance is the determining factor of medical outcome. The person may then feel performance anxiety and fear of failure. If these feelings are present during daily practice, the person reinforces precisely those states of anxiety which the techniques are intended to help. Another way of saying this is that the "scared inner child" is the one who does the technique rather than the composed, adequate adult who sees the big picture and relaxes into the process.
New Paradigm: Self-Help as a Contribution.
You can visualize perfectly and do everything right ten times a day, but there is no guarantee of what will happen medically. Such techniques must be seen as contributions to the overall program, but not as determining factors. They can in themselves be rewarding in terms of mood states, feeling of hope and optimism, reducing symptoms, and improving quality of life.
They are a way of taking responsibility to do the best you can with the resources you have now. They may also contribute to the overall flow of the healing process in the body, but they are not a panacea. The realistic perspective is to realize that self help is an important contribution to the larger multicausal approach.
Living with Ambiguity
Throughout [my book, Recovering from Chronic Fatigue Syndrome* I stress] the multicausal perspective, and the idea that both the illness and your recovery are influenced by many combined factors. One difficulty with the multicausal perspective is its ambiguity. It certainly would be easier to organize your response to a single cause such as a virus, than to tolerate the ambiguity of being told the illness is multicausal and there is nowhere to lay the blame. In this ambiguity, some will tend to even blame themselves, for this at least gives them a focus for their anger.
Likewise, it is easier to place all your hope for recovery in a single medication or even a single self-help strategy. Yet, you must constantly remind yourself of the big picture in coping with this illness. Often it is necessary to close your eyes, take a deep breath, and remind yourself that you can only do the best you can do, bring all the pieces together that you can, and then be patient.
[Several chapters of Recovering from Chronic Fatigue Syndrome*] explore in greater depth self-help strategies that will help you take advantage of the mind/body connection.
* This information is excerpted with kind permission from Chapter 7 (“The Benefits of Mind/Body Medicine”) of Dr. Collinge’s excellent book, Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment, which is offered free online at his website – http://www.collinge.org/Cfs.htm - and may be purchased as a 4-disc Audio CD Program at
http://www.collinge.org/CFSaudios.htm © William Collinge, PhD, MPH.
Dr. Collinge's FM Wellness Project Now Recruiting. Currently, Dr. Collinge is directing the NIH-funded online “FM Wellness Project,” a unique online project designed to identify patterns in details of the individual’s habits/activities that link to symptom fluctuation. The program welcomes both fibromyalgia and ME/CFS patients and is available free until July 1, 2010. For information and to submit an application, go to www.fmwellness.org
Is ME/CFS an Autoimmune Disease?Answered by Dr. Charles Lapp, MD
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This week's question & answer is from the “Ask the Doctor” page of the Hunter-Hopkins Center site (DrLapp.com). It is reproduced with kind permission of clinic director Charles W. Lapp, MD.
Is CFS/ME/FM An Immune Disorder?
Posted June 14, 2012 by Dr. Lapp
Q: …“I often get conflicting answers to this question. Is CFS/ME/FM an autoimmune disease?”
A: …“I don’t mean to conflict you further but the answer is “yes, and no.” Autoimmunity is certainly part of the CFS/ME/FM conundrum, but the disorder also affects the central nervous system, endocrine system, the muscles, and other areas.
Some of the first abnormalities noted in PWCs [people with CFS] were immunological in origin, namely an increased incidence of autoantibodies, low immunoglobulins, poor NK cell activity, activated T-cells (CD8/CD38), up-regulation of the 2’5’ synthetase system, and excess cytokine production. (References: Landay; Barker; Caligiuri; Klimas; Herberman; Suhadolnik; De Meirleir; Patarca; Moss; Kerr.)
As a result the majority of PWCs have anti-nuclear antibodies, and antibodies directed against thyroid and parietal cells are not uncommon.
This led to the 1992 grassroots movement to rename CFS to CFIDS, or Chronic Fatigue Immune Dysfunction Syndrome.
What is Energy Healing, and Healing Touch?Answered by Dr. William Collinge, PhD
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Q: I would like to find a way to help others, and I’m interested in the idea of “Healing Touch” that you mention in your Elder Healer Project. Can you tell us how this Healing Touch therapy works, and what kind of results it has?
A: Healing Touch is a form of hands-on energy healing.(1) It is very subtle, and can be very pleasant and wonderful. It is derived from Therapeutic Touch and has a great deal in common with that, Reiki, and other forms of energy healing.
Healing Touch has been found to help people reduce pain, anxiety, and other symptoms, and to help elevate mood. One of its chief mechanisms, I believe, is helping the recipient to deeply relax, which in and of itself activates the body’s healing systems very nicely. [For more on this, see "The Healing Power of Deep Relaxation," and "Your Immune System and How It Works" (as part of the body's broader healing system).]
I started the Elder Healer Project in an effort to help regular lay people learn that they can develop their own healing abilities and that we don’t have to be dependent on professionals or professional training to receive this wonderful gift....
I would encourage anyone with an interest in developing their innate healing abilities to pursue training in any form of energy healing, including Reiki, Therapeutic Touch, Healing Touch, Pranic Healing, etc. You might think you are doing this to heal others, but the reality is that by accessing these abilities within yourself, you promote your own healing as well.
In my ideal world I would have all people with ME/CFS, Fibromyalgia, cancer, HIV and other chronic illnesses become healers in this way.
There are many good books available on simple healing techniques. Check out any book on Reiki or Healing Touch. Also, my book, Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness, has several chapters describing how to use some of the simpler techniques with family and friends. I also have a DVD program for caregivers of cancer patients that teaches simple massage and touch techniques (How to Give Comfort through Touch and Massage to a Loved One with Cancer). This may be of interest for a wider audience as well.
This week's question & answer is from the transcript of a live chat with Dr. William Collinge, PhD. William has researched, developed and taught mind-body healing techniques for people with chronic illness and depression since developing the first self-help program for Dr. Dan Peterson's CFS patients after the Incline Village outbreak of the 1980s. For more information see www.Collinge.org.
1. Healing Touch, a therapy first championed by the American Holistic Nurses' Association and now employed in many hospitals and care facilities, involves gently moving the hands over a patient's body so as to induce relaxation. For profiles of the many leading healthcare facilities and systems that offer this therapy via staff and trained volunteers or family members, click here.
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, Illness or disease.
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Note: This information has not been reviewed by the FDA. It is generic, is not intended to prevent, diagnose, treat or cure any illness, condition or disease, and is not meant to replace the personal attention of a medical professional.