Welcome to ProHealth’s Live Chat Q&A with Dr. William Collinge, PhD, MPH, held Friday, April 25 in the ImmuneSupport.com Community Chat Room.
About William Collinge
Dr. Collinge (William), is a behavioral medicine practioner/researcher in the field of complementary therapies for Fibromyalgia, ME/CFS and other chronic conditions. He began working with CFS in the late-1980’s with the patients of Daniel Peterson, MD, in Incline Village, Nevada - whose practice was one of the first to bring CFS to national attention.
William developed the first mind/body medicine program for CFS at that time and published the book Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment. The book is now posted free on his website (http://www.collinge.org) in both English and Spanish versions. His other books include The American Holistic Health Association Complete Guide to Alternative Medicine, and Subtle Energy.
His forthcoming book - Partners in Healing: Simple Acts of Heart and Hands to Help Your Partner Heal from Illness - will be published by Shambhala Publications in December, 2008.
In 1998 William published a study of the effects of meditation on the course of CFS in the journal Subtle Energies and Energy Medicine. A summary of the study is also available at http://www.collinge.org. He continues to work with ME/CFS and Fibromyalgia, and currently has a research project funded by NIH on a behavioral self-management program for reducing symptoms in FM.
The focus of this forum is on self-care and self-management strategies, coping with ME/CFS & FM, and lifestyle and behavior factors that may help people manage and improve with this serious health challenge.
Q: Welcome, William! Thank you for being here. How did you first become interested in alternative medicine, and especially helping people with chronic illness?
Dr. William Collinge: I had always been interested in holistic health in a general sense, but became seriously interested in alternative medicine during my doctoral work at UC Berkeley in the 1980’s.
At that time I was studying the psychological aspects of cancer, and I soon discovered that almost all the people I was studying were using alternative therapies of one kind or another. That led me on a long exploration of most alternative therapies.
One of my observations, however, was that people often tend to use these therapies in the same way as they use drugs. That is, expecting the therapy to do all the work. Sometimes a given therapy does seem to cause transformation in one’s health, but in my experience, the one “big gun” you can count on the most is behavioral self-management and lifestyle change.
This is not to trivialize illness, but rather to recognize the HUGE impact that our daily behavior choices have on our body’s healing mechanisms.
Q: Dr. Collinge, one of your books is titled “Recovering from CFS.” In your experience or based on research, what percentage do you believe improve or recover?
William Collinge: I don’t know. But I do know - now more than ever - that this question is not what really matters. What matters to you is what happens to YOU.
Every study that was ever done was really a collection of anecdotes. You are your own unique anecdote, and no study of “group means” (averages) applies to an individual person. Within any group there is always wide variation. This is why my preferred approach to research is “N-of-1” research, in which people are studied as individuals. What really matters is what happens to you as an individual, not the group.
In our study of meditation and the course of CFS, we did a randomized controlled trial comparing group means, and we found no difference between the control group and experimental groups.
What we did find, however, that was truly meaningful, was that we could predict what would happen to each individual based on their frequency of meditation practice. This is more practical information.
In our FM study [the Fibromyalgia Wellness Project, an interactive web-based program] we are taking the same approach. We are helping each individual learn what works best for herself as a unique individual.
Q: Given your 20 years’ experience with these illnesses, does ‘recovery’ mean it will never come back? Or do you think it might be like the shingles virus – hiding in our cells until we get run down?
William Collinge: My opinion is that a person with CFS and/or FM has demonstrated a genetic vulnerability to this illness, and will likely always have that vulnerability, because of the genetic component. This does not mean you cannot get better, it just means that when you are better, you will still be vulnerable to relapse if you abuse or stress yourself too much.
You have to live at a new “balance point” or “harmony point” that enables you to avoid relapse, or minimize the severity of relapses. You have to live more mindfully and responsibly than people without that particular vulnerability.
Q: Based on the symptoms you see in people who have CFS or FM or both, do you suspect these are different expressions of the same disorder?
William Collinge: I have seen people who fit one diagnosis but not the other, but I think a large percentage overlap. This suggests they may be variants of a common underlying disorder.
But regardless of the nuances of the science of this, you can easily see that the one single greatest symptom to treat in both of these is the sleep disturbance. Quality sleep is when healing of ALL bodily systems takes place, and without good quality sleep any vulnerability you have will become expressed.
So, I harp on this all the time, that the single most important symptom to treat in both CFS and FM is the sleep disorder. This of course opens many new doors through which we can explore what daily behavior and lifestyle factors we can manipulate to improve sleep quality. [For more on this, see “Sleep Disorder: The Most Important Symptom.”]
I have to tell you of a recent patient who was receiving cancer treatment and was complaining about his terrible inability to sleep. No medication would help him get quality sleep.
I asked him about his eating patterns and substances. “No coffee,” he proudly announced. Turns out his favorite bedtime snack, for comfort, was coffee-flavored ice cream! Which of course has caffeine in it. After connecting these dots, he was able to sleep and manage his cancer treatment much better.
This is just one example of how a behavior or habit pattern that we may not think is connected to our sleep quality or other symptoms may actually have a big impact.
Other possible patterns could be things like:
What time you eat your meals (eating earlier in the evening rather than later may improve sleep quality),
How long you nap during the day (longer may impair sleep at night),
What time you go to bed and get up (earlier/earlier may allow better quality sleep than later/later),
What time you exercise (exercising heavily in the evening may be over-stimulating, while earlier in the day may allow better sleep that night), etc.
There are many avenues you could explore to find ways of influencing sleep quality.
Q: In your studies, how did people reach a balance point?
William Collinge: The interesting thing about my studies is that everyone is so utterly unique.
There is no prescription for how "people" reach a balance point. Rather, each individual has to find what works uniquely for her or him. This means taking stock of all the things in your daily life that could potentially influence your symptoms - from what time you get up, what time you eat, how much stress you have, how many arguments with your husband, what time you go to bed, how much exertion in your exercise... all these things are potential modifiers of your symptom levels.
In our Fibromyalgia Wellness Project, we encourage people to manipulate all these little things in order to find what patterns might help reduce symptoms.
Q: William, what will the next phase of your online FM Wellness Project involve? How many can participate in it, and how could I apply to be in the study?
William Collinge: The FM Wellness Project is a study of a web-based, interactive, behavioral self-monitoring program to help people discover what personal behaviors help them reduce their symptoms. We have completed Phase I and are awaiting funding for Phase II, which hopefully will happen in the next few months.
In Phase II we will recruit more than 2,000 participants to try out the program. That will be about two years from now, so don’t hold your breath. But when we are ready to launch, the study will be announced at ProHealth/ImmuneSupport.com and the leading Fibromyalgia support websites.
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?
William Collinge: 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 "Your Immune System and How It Works," and "The Healing Power of Deep Relaxation."]
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 hope to take this project to Phase II in the future also, but for now we are in between phases.
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, FM, 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 forthcoming book Partners in Healing will have several chapters describing how to use some of the simpler techniques with family and friends. I will also have a DVD program for caregivers of cancer patients coming out late this year that teaches simple massage and touch techniques. This may be of interest for a wider audience as well, but won't be available until December.
Q: In counseling patients with depression, do you tend to suggest a combination of drugs and alternative therapies? Is there something you tend to try first?
William Collinge: I recommend that people work with a competent physician and use antidepressant medication if indicated. Having a chronic illness is depressing, and with ME/CFS & FM, the biochemical activity of the disease process induces depression.
You don’t have to be mentally ill to be depressed from these illnesses. I often tell people, only half kidding, that they'd have to be crazy NOT to have at least some depression with this. So I am in favor of using well-planned antidepressant medication - which may be a much smaller dose than your doctor is used to prescribing (due to your heightened sensitivity).
That said, the devil is in the details: You have to be willing to do some trial and error to find the right drug and the right dosage. Don’t be shy about giving your physician a hard time until you find what’s right for you.
Keep in mind that one of the chief benefits of anti-depressants in ME/CFS/FM is their immune-modulating effects. This is why a micro-dose often has great benefits. Please understand that I am not saying that depression causes these illnesses. Depression does NOT cause them. They involve a discrete multisystemic disease process and are not psycho-genic.
Q: You mentioned earlier that the amount of meditation one does improves CFS and Fibro symptoms. Could you please elaborate?
William Collinge: What we found was that one's frequency of meditation was predictive of whether they would report improvement in their CFS symptoms at the end of a year. Those who meditated three or more times per week were three to four times more likely to report improvement at the end of a year.
But there was a caveat: This held true as long as they had some social support and social participation. For people who were socially isolated, no amount of meditation predicted them reporting improvement at the end of the year.
This tells us that social connection is vitally important in order for a person to benefit from meditation. They need to have a sense of connection with others in their lives. So I would recommend doing what you can to get connected and stay connected - whether in a spiritual community, just friends, a church, volunteer work, or anything else that keeps you connected.
Research is pretty clear that a sense of connection with others contributes to health regardless of what other treatments or therapies one might use.
Q: How do you feel good about life, when nothing good ever happens? I lost most friends due to this disease. I have talked with doctors about depression and anxiety, and I’m on medication, but I’m more in depression than ever.
William Collinge: This is one of the most poignant questions I hear, and I am sorry it has to be asked. These illnesses for many people are an existential crisis. They provoke one to question life’s purpose, values, and meaning.
In my opinion, the place to go with this question is into one’s spiritual life. Your spirituality is something that transcends your medical condition, and it is a potential source of support. I always ask a client whether they have a spiritual or religious tradition or system that is a resource for them. And in my opinion, ME/CFS or FM is a call to go deeper into this than perhaps you have gone before.
I would encourage you to seek a practice or a tradition that you find to be nourishing, and I would encourage you to abandon any practice or tradition that you do not find to be nourishing.
This may mean turning away from a life-long tradition, and this may take courage. But the reality is that some traditions are more uplifting, enlivening and energizing, and others are the opposite.
Your body will tell you what tradition resonates with your sense of well-being. A church, synagogue, mosque, sangha, meditation group, or any other gathering place where you can connect with people who share an interest in spiritual nourishment, could be an important support for your healing.
You may be surprised at what lifts your soul if you stay open - could be someplace unexpected.
Q: I think a lot of us share this problem…These illnesses do make you feel socially isolated.
William Collinge: Yes, they do isolate you. This is one of the great and sad challenges of CFS & FM. While illness certainly does limit the quantity of connections, you may be able to have one or two or three connections - where there is good quality of communication or sense of spiritual connection with others. Anything you can do to nurture that would be a benefit.
In the end, however, you need a way to cope with the aloneness, and a spiritual framework can help with that, too. I wish I could be more helpful with this question, I know how painful it can be.
Q: You say that two factors seem to predict CFS recovery time - “severity of symptoms at onset” and “psychological adjustment to the diagnosis.” What does psychological adjustment mean?
William Collinge: Psychological adjustment means accepting the reality that you have to live differently and care for yourself differently, and then following through. This is the opposite of denying your vulnerabilities and attempting to push yourself to be productive beyond your capabilities now.
It means having a sincere attitude of compassion toward yourself and your body, acceptance of yourself and your body, and treating yourself and your body with loving kindness.
It means taking deliberate steps to adapt your daily behaviors and circumstances to accept the reality of your need to find a new path of balance and harmony. [For more on this, see "Promoting Recovery from CFS: The Fifty Percent Solution" - a step-by-step guide to managing the cycles in ME/CFS.]
Q: Are pets helpful in finding a balance?
William Collinge: This is a great question. Certainly pets are a source of nourishing connection. I would encourage having a pet, especially for those who are suffering with the isolation. Pets are sentient beings, and they can enable you to experience a true sense of connection.
In loving and caring for a pet, you access states of consciousness within your self that you may not otherwise access if there are not other people in your life. A pet can help you access your heart, and feel love and caring, and these feelings in themselves are healing for you. They evoke relaxation, they open the heart, and they give a sense of connection that may not be available from people at this time in your life.
Q: Just when I begin to feel more connected at my church, then I'll have a long siege of some kind of infection & I lose that sense because I can't be a part of a group on a consistent basis.
William Collinge: That's an interesting question in light of the espoused intentions of most churches and spiritual organizations. I would assume that the people in your church have a belief system that would encourage them to reach out and serve others to some degree.
Serving others is seen in a spiritual context as a valuable activity for one's own personal spiritual development. I would imagine that there are people in your church who would welcome an opportunity to reach out and connect, but may not realize that is your desire or need. They may be reluctant to offer, because they may feel you want your privacy.
Or, they may feel they would simply be imposing. It's interesting that often the people who would offer help withhold it because they don't know when or how it might be welcome.
Here is where you need to be skillful, or perhaps courageous, in communicating to others that you do have a need and would welcome someone reaching out to you. I would encourage you to express your feelings of vulnerability and your welcoming of contact from others in your spiritual community.
Q: I'm thinking of talking to our pastor with the idea of developing some sort of telephone connection for people like me who can't be there & participate on a regular basis.
William Collinge: That's a good idea, and again, being a little pro-active about putting your needs out there is a good thing. Very often I find that people who have something to give do not recognize the opportunity and need a little help.
Remember, giving carries some rewards for the giver, and by receiving you are helping them experience this, which is good for them.
Q: Dr. Collinge, do you have any ideas for how to help/support spouses who also deal with the burnout of chronic illness? In addition to his demanding full time job, he does tons of chores at home, plus dealing with my emotional ups and downs of having FM.
William Collinge: That's actually the subject of my new book, Partners in Healing, which is coming out in December. You are indeed fortunate to have a spouse who cares in that way. But I must tell you that the first chapter of my book is "Put Yourself First" - meaning the spouse or partner making sure that his own needs are met.
The metaphor I like to use is that the heart pumps blood to itself first, before it sends it to anywhere else in the body. Without a functioning heart, nothing else functions. I would encourage this person to take time for himself and his own needs and nourishment, even if he risks judgments of "selfishness" at times. Only he can be responsible for getting his needs met, and everyone will suffer if he neglects himself.
I would also like to point out that even though a person has ME/CFS or FM, that does not mean that the person has nothing to give. Even a five-minute shoulder rub could be much appreciated, or just encouraging him to take an evening off and let the house be a mess, could be a real blessing for him.
Q: Has any correlation been shown between developing FMS/CFIDS & having one or more of the primary people in one's life being extremely negative or even emotionally abusive?
William Collinge: Certainly living in an emotional climate of chronic stress poses a burden on one's body and could be a contributing factor to the development of stress-related illness. That said, I believe that we are finding a greater role for genetically-determined vulnerabilities than we used to believe was the case.
I think that CFS and FM are certainly exacerbated by such stress, but for such diseases to develop there needs to be a predisposing genetic vulnerability, in my opinion.
Q: What factors if any do you think determine ability to recover? Anything I can control?
William Collinge: I would say that most likely the two major factors predicting recovery would be genetic vulnerabilities, that we can't do anything about, and behavior, that we can do a whole lot about. You have the ability to change a great deal about your daily self-care and self-management behaviors that can make a difference.
The key in my opinion is to become pro-active about studying what behaviors in your daily life seem to make your symptoms worse and what makes them better. For example, consider cycles of day and night. The body goes through cycles in each 24-hour period that are interconnected with the cycles of nature around us. It’s pretty obvious that eating a heavy meal at midnight is not a good prescription for quality sleep.
Also, going to bed at 4 a.m. every night and getting up at 1 p.m. every day is also out of sync with the energy patterns of nature. If we can be reasonably in harmony with the patterns of nature – such as getting up with the sunrise and going to bed after sundown – we gain certain advantages.
For example, serotonin is a good mood elevator and immune modulator, both of which are important in CFS. Serotonin production is stimulated by sunlight. If you are in bed 12 hours a day, the optimal 12 hours to be in bed would be 7 to 7, not 12 to 12. By changing your pattern to 7 to 7, you get an additional five hours of sunlight and stimulation of serotonin, compared to a pattern of 12 and 12.
This can only help, and may even save you money on SSRI medication! This is just one example of what I consider a huge potential source of influences on our health each day, all driven by choices we make.
Q: Dr. Collinge, where's the best place to start when initiating an action plan to change behavior? Reconsider old thinking patterns, or jump into something new altogether?
William Collinge: I'd suggest you read my book on the website (http://www.collinge.org.) The whole thing is about becoming more mindful of your daily behavior and lifestyle choices, as well as attitudinal aspects. I would hope it would give you a sense of clarity to find your way.
This is not necessarily curative. After all, we know very well in ME/CFS that "recovery" is a relative concept - recovering a greater sense of balance and control over one's life, rather than recovery in the sense of "complete cure."
But there may be many things you can do to reduce your SEVERITY of symptoms, even though you still have them; or to reduce the duration or intensity of relapses, even though you still have them.
I encourage people to experiment with new ways of living each day. Sometimes subtle changes and tweaks of patterns (like meal times, sleep cycle times, etc.) can shift your body's rhythms and responses - and before you know it you start to build momentum toward a higher level of functioning. You will still have your vunerability, but you may be able to function at a somewhat higher level.
On the website is also a description of my CD program that accompanies the book. Some people like to use these (or other) guided imagery and relaxation techniques as a daily self-healing practice. The program includes guided instruction in mindfulness meditation, as was used in the study on CFS and meditation cited earlier.
You can also learn mindfulness meditation at many meditation centers all over the U.S. and around the world.
Chat Administrator: Thank you, everyone, for enriching the Dr. Collinge Live Chat with your thoughtful questions, and thank you, William, for your generosity in joining us here today.
William Collinge: Thank you all for your participation in this forum. I want to reaffirm that I recognize and appreciate the reality of the extreme debilitation that ME/CFS and FM poses for many people.
I think one has to be a true spiritual warrior to survive it, and I commend you all for hanging in there and continuing to seek answers. Best wishes to you all - William
Best wishes to you too, William. Gentle hugs. :-*
Thanks for the inspiration, Dr. Collinge! Wish we had someone like you here where I live.
1. Healing Touch, a therapy first championed by the American Holistic Nurses' Association and now employed in many hospitals, involves gently moving the hands over a patient's body so as to induce relaxation. For profiles of some leading healthcare facilities employing this therapy, 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. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.