‘Right Living’: An Interview with Dr. Friedberg – Part II by Cort Johnson
Your program takes some work and the results will probably come more slowly than people are used to expecting. This is not easy and at one point you state that “I sincerely wish that I had a quick and effective solution. But it doesn’t exist right now”. Do you see a quick and effective solution for ME/CFS/FM appearing anytime soon?
No I don’t see a quick solution to these illnesses right now. My guess is that any new effective treatment will require lifestyle adjustments to get the best result. This is what you have with any number of chronic conditions. For instance, medical treatment for heart disease still requires healthy habits to get the best outcomes.
You believe that ‘pacing’ or finding and living within your ‘energy envelope’ can really pay off. What is the theory behind ‘pacing’ or slowly enlarging one’s ‘energy envelope’? Say you’re a 4 on the pain/fatigue scale how far can rigorous pacing get you with 10 being perfectly healthy? Is your typical ME/CFS patient doing too much or too little?
Most people with the illness are still doing too much, although less than when they were well. By doing too much, I mean that they are in constant exhaustion states doing things they must do (e.g., job, family obligation) and possibly adding in activities like occasional vigorous exercise. One person told me that if she didn’t have her job and family responsibilities to keep her going, she would just sleep. On the other hand, perhaps 1 in 4 people are doing too little and may be homebound and on disability. “Too little” means that they have the potential to do more in a measured way, but they feel unable to break out of their low activity patterns. I will say that even when you feel locked into your schedule, there are ways to modify it and feel more in control of your symptoms.
You state that negative thought patterns which sort of insinuate themselves into ME/CFS patients minds can deplete their energy and impair their well-being. As an example you give the thought “I’m so sick!”. This thought, though, seems like a normal outcome to situations ME/CFS patient’s often find themselves in; every time they overdo it seems like the reaction “I’m so sick!” would naturally pop up. How does a thought like this cause problems over time?
A thought like “I’m so sick!” generates feelings of discouragement, demoralization, and a sense of physical malaise. That malaise will almost imperceptibly meld into your illness experience so that you feel more ill. You may think that your illness feelings are only illness-based, but that additional malaise does a good job of mimicking the illness experience so that you feel more sick. If the discouragement is almost always there, then it’s helpful to distract yourself into pleasant thoughts and activities as much as possible. When you do this, you will see the change in your illness experience-which becomes more of a background factor.
I think it would be extraordinary if some negative thoughts/behavior patterns did not insinuate themselves over time into most ME/CFS patients given what they have to deal with. You propose combating these negative thought patterns simply by repeating a preformatted response for five minutes a day. For guilt you suggest something like ‘I will do what I can reasonably do and I will value this achievement rather than condemning myself for what cannot be done’. What does this do?
If an individual has a pervasive sense of guilt, especially true in FM, it is usually linked to self-condemning thoughts, such as “I’m no good, unworthy, inadequate, or not a nice person.” If these thoughts are challenged (even for a few minutes a day) with logical coping statements as you’ve stated, the guilt-producing thoughts will lose their power to upset and stress the individual. When stressful emotions are purged, quality of life improves and the burdens of being ill are eased. That said, not everyone who is ill has intense ongoing negative emotions, so coping on this level is best recommended for those who have this kind of stress.
This brings up the question of how different ME/CFS and FM patients are? As a clinical psychologist do you see different kinds of problems/traits in these two disorders?
In FM, I see more suppressed anger. With ME/CFS, the anger is verbalized more easily. Also, in FM, the caretaking, people pleasing behaviors, and the level of self-sacrifice seems to be greater.
A lot of the advice in your book is contrary to the behavioral patterns we grow up with. Healthy people don’t ordinarily look for negative thought patterns, nor do they check if they’re being ‘hyperactive’., nor do they keep activity logs, etc. It seems like you’re proposing that ME/CFS patients develop a kind of attention to what they’re doing, how they’re thinking and how they’re interacting that most healthy people wouldn’t even dream of doing. Why is this kind of care needed in ME/CFS?
Actually, if you look at medical care today, a fair amount of it is oriented toward self-care and self-management of problems at home, even for people who are ostensibly healthy. Things such as high cholesterol, metabolic syndrome, poor diet, stress, and sedentary lifestyle are all risk factors for illness. The doctor or other health professional may recommend a daily diary to identify unhealthy patterns so that corrective action can be taken. Of course, no one gets excited about doing self-monitoring, but it is an important part of staying healthy or managing illness. Also, note that 40% of the population has a chronic condition, so total health is not the norm for many people.
Paying close attention to your daily patterns is important in ME/CFS but it is hardly a fun activity. Perhaps the implication of your question is that it seems kind of unfair that you have to be inconvenienced with all this extra attention to what you do. When others just go about their business without pondering whether they should or should not do something due to fatigue problems. Good CFS management seems to require some level of attention to what you do. I think this is a healthy corrective for many people who may have ignored bodily signals of exhaustion before they became ill.
Gathering evidence suggests that the stress response systems are impacted in ME/CFS and FM. This would imply that people with these kinds of diseases are impacted more by stressors of every kind; physical, mental and emotional than healthy people. If that’s true then it would seem logical that giving attention to activity patterns, negative thoughts, sleep hygiene would make sense in this type of disease?
Yes, people with these illnesses are often broadly sensitive to all kinds or stressors-including the internal stressor of their own negative thinking. So purging stress related to personal activities will help to ease the burden on overtaxed stress response systems.
We tend to think of chronic fatigue syndrome as a female disease but about a third of ME/CFS patients are men. Are men affected any differently by or try to cope with this disease differently than women?
Good question. Few comparisons have been done between men and women with ME/CFS. We do know men with CFS are more likely to continue working. And in general men are less likely to go to the doctor. I spoke to one man with CFS who was unable to work for 3 years and hadn’t been to a doctor! Also, men with CFS are more likely to have alcohol or substance abuse problems.
I imagine that in their desire to be as little of a burden as possible many ME/CFS patients are always pushing their energy envelopes. When you already feel guilty about how little you can do it’s hard to cut back even more. For one thing you have to admit you’re even weaker than you seem. Sometimes, though, you think it’s necessary. How do you get past that?
Yes, this is a tough one. It’s important to separate inability to do certain things from the idea that you’re totally weak. One does not equal the other. So you can limit the emotional toll by not basing your worth on what you cannot do right now. This takes practice to get results. Because there is so much unpredictability with ME/CFS, illness flare-ups can catch you by surprise. And at those times, you are less capable than what’s usual for you. But again, you don’t have to self-condemn (or get excessively frustrated) which makes you feel even worse.
One issue many ME/CFS patients have to deal with is being dependent on others. I’m, for instance, utterly dependent on my father and siblings. Even though I can rationalize it I have this disease, etc. it’s really an appalling situation. How can ME/CFS patients, many of whom are the midst of their most ‘productive’ years, effectively deal with their need to be dependent?
This is especially troublesome, because many people with ME/CFS have prided themselves on being completely self-sufficient and caretaking of others. Now the situation is almost reversed because you may need help and feel dependent – something that violates your image of yourself. Although this situation may never be all that comfortable, you can reduce the stress connected to it by lessening self-anger, guilt, and discouragement. It is not a disgrace to be ill and need help. Bottom line: Although it can be immensely difficult at times to need and accept help, this is not an end of the world event-it’s just very unfortunate.
IIf you’ve had this disease for a while it’s very, very difficult to watch people around you progress and change while you’re basically stuck. They move through the normal stations of life; they get married, raise a family, progress at their job, accumulate things, etc. These are the kind of achievements that people in our society often measure their worth against. How do you maintain a sense of value and self-worth when your health prevents you from fully engaging in these aspects of life?
You really know how to ask the easy questions (!) You are talking about potentially wrenching adjustments to a life that has changed. I think you downsize your expectations for yourself and avoid making unfair comparisons to healthy people. The most useful personal measure is progress that you’ve made since being ill. Value what you do to help yourself and the successes you do have, however modest, given that you are ill.
Many of the things you propose in this book are designed to improve your quality of life. You say, though that it goes further than that; that a by-product of improved quality of life is often improved health as well. I think most of us look at this from the other way around; first you improve your heath then your quality of life will naturally improve. Until then you’re just stuck. Can you talk about this?
Yes. A central point in the book. I think you put your life on hold if you “wait” for your illness to improve. In its extreme form, life is just not acceptable unless you are well.
And “wait” is the right word, because you don’t know when you’ll be better and there is no treatment as of yet that will hasten your ability to get there. I was particularly stubborn: I “waited” for 18 years before I gave up on a medical solution. To put it more accurately, I was looking for medical “salvation.” Rescue me from this illness! That leaves you with a feeling of total dependence and all of the negative emotions that go with it.
But the reality is that you can improve your quality of life AND your illness through good illness management.
Similarly you say that people ordinarily believe that joy springs from wellness but you note that wellness also springs from joy and you propose that in ME/CFS patients actively try to induce pleasant moods in their lives; in fact they should list pleasurable activities, schedule them, and then rate them according to their pleasure and wellness effects. This is the kind of thing that many would kind of shrug off as rather inconsequential but you believe that stringing these ‘pleasure sessions’ together over time can have significant benefits. How can these activities affect ones health?
An interesting study published in the mid-1990s by Dr. Colette Ray and others followed 130 people with ME/CFS over a one year period. Those individuals with the highest number of positive events and pleasant activities showed significantly less fatigue, less impairment, and less stress than those with the lowest number of positive events. The more pleasant low effort activities in your life, the greater your chances for improvement. Also, in an FM study, when mood was uplifted, daily pain decreased.
There may be a link between pleasant experiences and symptoms: These positive experiences may restore healthier levels of stress hormones, such as cortisol which is low in CFS. Healthy levels of cortisol in turn keeps the immune system in check, so that it does not upregulate and produce the flu-like symptoms of ME/CFS. At least this is one theory of the mind/body link in ME/CFS.
This is a tough question but do you have any idea what’s happening when ME/CFS patients tip over the edge from somewhat healthy functioning into a crash? Everybody’s experienced it; you go a bit too far with some activity and then you start to feel things slip away and its not long before you’re in trouble. In my case my heart starts pounding, my muscles get all knotted up, I feel leaden, I have difficulty concentrating, etc. Can you take a crack at what’s happening during this process?
There are probably multiple factors that lead to a crash: Natural illness fluctuations is certainly one important factor. It is also likely that your activity and stress levels combine to yield a crash. But the amount of stress and activity required to trigger a crash can change so that a certain activity level is tolerated one time but leads to a crash at another time. Also, crashes may be delayed-by a few hours to a few days from the triggering events. It can be a challenge to figure out how much exertion is too much and then try to be proactive to prevent a crash.
I’m sure there are people reading this who are profoundly, profoundly ill homebound and/or bedridden. They can tolerate so little activity that one wonders how much of a ‘lifestyle’ they have to manage. What does your approach offer to people with this degree of illness. Can a lifestyle management program help them?
I have worked with some people who are homebound. And the results are mixed. With some, quality of life is improved, but their ability to function is only modestly improved. Actually, those who are most stressed seem to do better, because the stress itself can usually be effectively managed and as that happens, their physical abilities may strengthen.
Gradual increases in low level exercise or pleasant activities seem to be most important to achieving functional gains. This begins the process of re-developing a clear sleep/wake cycle where activity increases during the day and quiets down at night. For instance, some homebound patients show a busted up sleep cycle: Activity patterns at night (measured with portable devices) suggest that the person is restless and half awake and the daytime patterns look almost identical. A healthy sleep cycle shows clear differentiation between day and night activity levels.
At one point you speculate that the positive effects behind the cognitive behavior therapy studies may in no small part actually be due to better lifestyle management. Why do you think this?
Yes, this is a good point. Cognitive behavior therapy, at least as it has been done in studies outside the US, has focused on gradual increases in walking to develop tolerance of activity without symptom flares. Although I think this can be helpful, it doesn’t help everyone. In my view, learning to balance activity and rest is the central element of self-management, not simply increasing activity.
I trained and supervised nurse interventionists in a NIH-funded behavioral treatment trial that was done in Chicago. The life balance intervention (also called coping skills) that I taught was more effective than the traditional cognitive behavior therapy using graded activity and exercise. Increasing activity by itself is only one part of illness management. Most important is to reduce stress-producing activities in your life and replace them with stress-reducing activities. This leads to the greatest improvement over time.
You’ve used pedometers to measure activity rates in ME/CFS patients who get significantly better. You’ve often found that they end up reducing their activity levels as they get better! What is going here?
For those who remain fairly active after they become ill, a healthy re-balancing of their lifestyle sometimes results in the person doing less activity overall. I saw one individual who during her lunch break at work took a vigorous (and exhausting) walk just to prove she wasn’t disabled. When she stopped that activity (and some other stress-increasing activities), her overall activity declined-and she started to improve.
You provide a variety of different methods patients can use to improve their quality of life and health. How important is finding each patient’s appropriate activity level to the success of all these other techniques? Should that be number one on a patients list?
Finding the right activity level is very important; Too high for the individual generates exhaustion; too low can lead to boredom and lethargy.
The right activity level for a person with CFS has nothing to do with healthy norms; It’s best to look at your own patterns and what works for you, rather than compare youself with others. That said, for many people with CFS, how well you handle activity depends on effectively managing stress. When you feel better able to control your stress (say by not over-extending yourself), you may be able to handle more activity without flare-ups. For example, regular walks that may have been impossible can now be done without problems.
Dr. Van Hoof presented an intriguing report suggesting that Eye Movement Densitization Release may be helpful in chronic fatigue syndrome. You’ve written a book asserting that it’s helpful in fibromyalgia. Do you find it helpful in ME/CFS as well?
I’ve found EMDR helpful for chronic pain including fibro pain. i haven’t had the good results that Dr. Van Hoof has had with CFS. But my verison of EMDR is to have people learn to do it themselves as a pain and stress management technique. She has patients come in for sessions. At the risk of more shameless self-promotion, I’ve written an self-help EMDR book, Do It Yourself Eye Movement Technique for Emotional Healing (New Harbinger, 2001). I think this is a quick and useful technique for pain and stress relief.
You started your book noting you used to be a runner and but that eventually you had to give up even small amounts of exercise. At one point you found, though, that you could play volleyball and over time you’ve been able work up to over an hour playing it without negative results. You attributed this to the shorter bursts of energy it required and to the social nature of the sport. You’ve obviously gotten much better; can you get back on the trails and run?
No I still cannot run. When that day comes, I will pronounce myself completely well. This does bring up the issue of why recovery is so elusive. You always have some level of symptom-producing stress in your life and it is difficult to control that all the time. Under ideal conditions, maybe that would possible. If I spent the next 4 weeks at Club Med, I know I would feel much better. But creating that kind of idyllic environment is just not realistic for most people. So you make due with good illness management where stressors, obligations, and other pressures are more or less unavoidable. Still, you can learn to function and feel better.
You’re forty to fifty percent improved. What does that mean? Does that mean that you can maintain a fairly high-quality life without significant crashes or flares so long as you restrict your activities? So long as you stay within your ‘energy envelope’ would you say you’re back to normal mental and emotional (if not physical) functioning?
Yes, I have a fairly high quality life, despite lingering symptoms. My short-term memory has recovered somewhat. Not to what it was of course. I’ve arranged my life to do things I know will improve my physical and mental well-being and make me feel more capable generally.
I do stay within my energy envelope. Of course, I’m testing it from time to time, to see if I handle more activity. And I do have somewhat more stamina-which is very encouraging and hopeful. Perhaps I’ll get back to running one day. No reason to give up that hope.
(04/09)