"Right Living": An Interview with Dr. Fred Friedberg by Cort Johnson
-Part I
Dr. Friedberg is not your typical psychologist; a clinician, researcher,
author and now President of the
IACFS/ME he's also had chronic fatigue syndrome (ME/CFS)
for over twenty years. For much of that time he did what most people with this
disease do; he spent alot of time and money trying every treatment he could.
About five years he stopped trying to overcome the disease and began to focus on
how he could interact skillfully with it - how he could manage it - and as he
did that it lessened its grip on him. His book below relays the insights he
gained during that process.
First the Book Review and then Part I of the Interview
Fibromyalgia and Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain and More
Energy. Fred Friedberg, Ph.D. 2006. - A Review by Cort Johnson
‘7 Proven Steps to Less Pain and More Energy’ doesn’t promise what most CFS
patients understandably want – a cure. In fact Dr. Friedberg believes that the
need for a cure (when one isn’t present) and the demand to be well (when that
probably isn’t possible) only makes things worse and possibly, given the nature
of this disease, much worse.
Dr. Friedberg is not talking off the top of his head; as a long-time chronic
fatigue syndrome (ME/CFS) patient himself, he notes he wasted a good deal of
time, money and energy struggling against the confines of this disease and that
substantial improvements came only when he learned how to interact more
skillfully with it. Dr. Friedberg still has ME/CFS but his quality of life and
his ability to function are much improved. While he is no longer the long
distance runner he once was he can now play vigorous games of volleyball without
relapsing.
With no new treatments looming on the horizon Dr Friedberg proposes that the
most effective thing patients can do is to learn how to ‘cope’ effectively with
this disease. Coping sounds like the kind of palliative term medical
professionals trot out when they’ve exhausted everything else; you should learn
‘good coping skills’ as if poor coping skills got you into this mess to begin
with.
But Dr. Friedberg means something very different from what’s usually associated
with the word. Instead of tinkering around the edges of this disease the program
he’s created has the potential to mount a real assault on it. Even if his
program doesn’t get you well Dr. Friedberg asserts that the vast majority of
patients who do give it a try will feel better and lead fuller and richer lives.
The Seven Steps are not new; they include relaxation strategies, sleep
strategies, pacing, identifying negative emotions and getting support and
involve doing breathing exercises, making activity logs, doing mindfulness
exercises, etc. What’s different about this book is the attention given to each
and by the fact they’re presented in a package by a medical professional who’s
successfully used them on himself and his patients.
The book is short and easy to read and Dr. Friedberg does an excellent job of
explaining each technique and why it’s relevant to ME/CFS. I would have liked a
bit more text than Dr. Friedman provides; a deeper exploration of the different
meditative techniques, more on the scientific underpinnings of the ‘mindfulness
stress reduction’ and worksheets or some sort of 'action plan'
patients could use to organize
their efforts but the book covers the basics.
It’s important to realize that Dr. Friedberg’s behavioral approach is more
complementary to the march of research than adversarial to it. If the stress
response is out of whack, as an increasing amount of research suggests, and the
post-exertional malaise in the disease implies, then Dr. Friedberg’s
recommendations to engage in activities that can help to rebalance it only make
sense.
In the modern ‘take a pill’ and see me tomorrow era of medicine Dr. Friedberg’s
program stands out in its emphasis on lifestyle management. It’s not sexy and it
doesn’t provide the ‘big’ answer that will make ME/CFS go away tomorrow but it
may very well provide the most good for the most people at this juncture.
To Dr.
Friedberg’s Website
"Right Living": An Interview with Dr. Friedberg - Part I
(To get a Pdf of this interview click here)
You’ve had ME/CFS for over twenty years. You’ve tried many different therapies
and seen many different practitioners and even moved twice in order to get into
cleaner environments. Your book, on the other hand, focuses on relatively simple
(if not easy) things ME/CFS patients can do themselves to improve their health.
How much improvement did you get by the first versus the second approach?
To my surprise, moving to a different, presumably cleaner environment (rural, so
less auto exhaust, I reasoned) did not help at all. Actually, my condition
worsened. The second approach (on which my book is based) involved doing more
pleasurable, but less exhausting things and getting more socially connected.
These new involvements have helped considerably. I’d say I’m 40-50% improved,
but I still cannot do the regular exercise (running) that I loved to do.
Instead, I play volleyball, which lessens my fatigue and makes me feel better
physically and emotionally –- and the improved feeling is sustained over long
periods. Part of the benefit comes from the sense of camaraderie and excitement
I get from the team I play on. Perhaps because it’s an anaerobic activity, I
don’t get symptom flares from playing the game.
Your approach, which you call a ‘lifestyle balance program’ suggests many ME/CFS
patients lifestyles are out of balance; that is given their disease, they have
an inappropriate lifestyle. What do you mean by this?
I was looking for a CFS cure for 18 years. Nothing less than
total health was acceptable! My search for cures led me down the path of
alternative remedies of all kinds. The result: little illness change and a
depleted bank account.
People with ME/CFS, before they became ill, and even afterward, have led
high-activity and high stress lifestyles. This may include full-time work,
family responsibilities, regular exercise, volunteer work, and too little sleep.
And usually people take little time for themselves. So your life is out of
balance in that you almost exclusively focus on being productive and caretaking
of others. I call this “helping and hard driving.” Although you may find
satisfaction in being so active (and receive admiration from others), you may
also feel stressed and pressured to continue this treadmill existence.
This high activity, high stress lifestyle in combination with other
vulnerability factors (e.g., genetics, immune defects, stress hormone depletion,
past trauma) leads to a collapse into illness. Bodily signals of stress and
exhaustion which have been ignored now trigger collapse. Of course, there may be
more obvious triggers, such as a car accident, a serious flu, a change in
medication, or any stressful major life change.
Once ill, many individuals may stay relatively active, but others may become
disabled and homebound. So, the unbalanced life can go in both directions –
continuing to do too much or doing too little. Even within an individual—push -
crash cycles can lead to a pattern of both doing too much or doing too little.
The idea is to find a healthy balance between these two extremes.
After you got chronic fatigue syndrome (ME/CFS) you slowly (18 years!) figured
out that lifestyle imbalances that were really affecting your health. They
didn’t before – prior to getting this disease you were able to tolerate a less
than optimum lifestyle without consequences for your health. For instance, your
tendency to overwork and isolate yourself didn’t stop you from going on your
long distance runs. For you relaxation/meditation efforts, increased social
contacts, seeking out more pleasurable activities has really helped. For someone
who’s a ‘social butterfly’ I assume different changes would be helpful Is the
‘recipe’ for lifestyle rebalancing going to change much from person to person?
Yes, what constitutes lifestyle balance depends on the individual. In general,
incorporating more low effort pleasant activities and more emotional support as
well as fewer high stress, high effort activities moves lifestyle toward
balance. But what activities are pleasant and what is high stress is defined by
the individual. And yes, my life was out of balance for some time before I
became ill.
I completely understand the desire to be restored to full
health. But we just don’t have the means right now, medical or otherwise, to get
there.
Your book doesn’t promise a cure; it promises seven proven steps to ‘less pain’
and ‘more energy’. My gut response when I look at a technique that promises
benefits but not necessarily a cure is a) the benefits are probably small and b)
that what I really want is to be completely healthy so I’ll keep looking for
‘the cure’. You suggest, though, this is probably not a profitable way to
approach ME/CFS?
Yes, Cort, I think you’re right on track with the reactions I sometimes get
about the book. I was looking for a CFS cure for 18 years. Nothing less than
total health was acceptable! My search for cures led me down the path of
alternative remedies of all kinds. The result: little illness change and a
depleted bank account. I completely understand the desire to be restored to full
health. But we just don’t have the means right now, medical or otherwise, to get
there.
So I ask people if they’re willing to accept half a loaf, if full recovery is
not possible now. I think the more flexible you are about how well you need to
be, the greater the chances of finding a path to improvement—through your own
personal efforts.
While it doesn’t promise a cure your book is not about cleaning up around the
edges. The goal of this ‘self-help’ manual for chronic fatigue syndrome (ME/CFS)
and fibromyalgia is to use lifestyle adjustments and these seven stress
reduction techniques to substantially improve one’s health. How far can ME/CFS
patients go using these techniques? Can they become well?
You can definitely improve with lifestyle
change, not just cope in a defensive way with unpredictable fluctuations in your
illness. I think it is possible to approach near-recovery or wellness by
arranging your life...
This is another critical point. You can definitely improve with lifestyle
change, not just cope in a defensive way with unpredictable fluctuations in your
illness. I think it is possible to approach near-recovery or wellness by
arranging your life so that you allow yourself the time for adequate rest,
relaxation and sleep, positive low effort experiences, full expression of
emotions, and good social support. Almost anyone who follows these lifestyle
guidelines can improve noticeably and sometimes very substantially.
You’re a strong advocate of using what you call ‘active, extended relaxation
strategies’ such as meditation, focused breathing, progressive muscle
relaxation, etc. and they’re the first step you cover in your book. Are these
things any person with a chronic illness benefit from or are they particularly
beneficial for ME/CFS/FM patients and if so, why?
The first prescription I give is for home relaxation using a relaxation CD. Many
people who I see with ME/CFS are extremely stressed due to frustration over
illness limitations. A sudden onset of any poorly understood debilitating
condition may trigger strong emotional reactions. Relaxation will ease that
stress and generate pleasant feelings. In some cases, perhaps 1 out of 10,
relaxation will produce significant illness improvements. On the other hand,
some people will not find relaxation beneficial because they are not overly
stressed or they just don’t care to do the techniques.
The first prescription I give is for home relaxation using a relaxation CD.
Your benefits from doing relaxation/meditation exercises increased dramatically
when you began doing them far longer than most people would think to do. At one
time I believe you were doing several hours of these exercises a day. This
seemed to get you over the hump so to speak and after a time you could attain
the same effects by doing much lower levels. What happened here do you think?
Were you kind of retraining your central nervous system to calm down? To operate
at a slower, less frenetic pace? To burn up less energy?
I did the meditation twice a day, 20 minutes each time. Sometimes I increased it
to an hour a day. I once went on a meditation weekend and did 2 hours a day.
After that, I felt buffered from stress for about a month. The meditation caused
me to react much less to any problem or stress. For instance, I might think
angry thoughts, but I only felt slightly angry. Prior to the meditation, I would
feel like a pressure cooker when I was angry.
Your program is the opposite of the pop a pill approach that permeates medicine.
It takes some time and discipline to get the full benefit. For instance, it
appears that the more you put into these ‘extended’ relaxation strategies the
more you get out of them. You noted that an author of a fibromyalgia stress
reduction/meditation study stated ‘it is only the people that use this technique
regularly who show a decrease in the stress response’. How much time does the
average ME/CFS/FM patient need to devote to these practices daily to show a
significant benefit?
To sustain
these benefits requires some level of regular practice over several weeks time.
You can see benefits after a single 15 minute relaxation session. But to sustain
these benefits requires some level of regular practice over several weeks time.
Twice a day is ideal. But once you learn to associate a relaxation technique –
say even 20 seconds of focused breathing -- with tension release, then you can
use it almost anywhere to dampen stress and generate good feelings. I practiced
meditation regularly for 15 years—and I have what you might call a
near-permanent state of relaxation. I rarely feel upset or stressed the way I
used to be.
Can researchers point to physiological changes occurring in the body as a result
of these practices?
Yes. There is a fairly substantial scientific literature on the benefits of
relaxation, including improvements in immune function and stress hormones. Both
of these physiological processes are implicated in ME/CFS.
I practiced
meditation regularly for 15 years—and I have what you might call a
near-permanent state of relaxation. I rarely feel upset or stressed the way I
used to be.
Physicians often say that getting good sleep is critical to a chronic fatigue
syndrome (ME/CFS) patient’s recovery. Given that it’s not surprising that many
patients at some point turn to and benefit from prescription drugs. You spoke of
one patient, though, who found that a combination of a relaxation tape and a
progressive muscular relaxation exercise was more useful than drugs in helping
her obtain consistently good sleep. Can these types of exercises reduce
prescription drug usage or even take their place for a significant number of
ME/CFS patients?
The short answer is “Yes.” Deep relaxation before bed programs the body for more
restorative, restful sleep. Of course, it’s easier to take a pill (assuming it
works), but if you want to self-manage your sleep without medications, it can be
done. Relaxation can reduce your need for sleeping pills and it will counteract
that “tired and wired” feeling that many people have at night before going to
sleep. And if formal relaxation doesn’t suit you, any personally relaxing
activity may work just as well. This could be listening to soft music, pleasure
reading, etc. If it leads to a sense of deep calm, you get the sleep benefit.
You also told a similar story of someone who was able to reduce her pain
medication and became more pain free rather quickly after starting muscle
relaxation exercises. Again, is this a pattern you see often? Is the ME/CFS/FM
population as a whole missing some effective, healthy and cheap ways to reduce
their pain?
Relaxation can reduce pain in ME/CFS/FM if practiced regularly. And that may be
all that some people need. But often, the pain is anchored, at least in part, in
an individual’s emotional life and that must be addressed as well. Strong, but
unexpressed emotions are a big contributor to the type of widespread pain you
see in FM. People with FM may be angry at themselves for failing to live up to
their own high standards. Also they may be angry at unsupportive family and
others—given all that the ill person has done to provide for and help those
close to them. But the individual may be unable to identify or express that
anger and so it festers internally, creating physiological changes that produce
pain.
Learning how to express that anger constructively and ask for what you want (and
not doing what you don’t want to) is a first important step in managing your
life more effectively and reducing persistent pain.
Relaxation can reduce your need for sleeping pills and it will counteract
that “tired and wired” feeling that many people have at night before going to
sleep.
Your discussion of ‘longstanding hyperactive patterns’ in chronic fatigue
syndrome (ME/CFS) really rang a chord for me. It seems bizarre that someone with
a fatiguing disease could exhibit ‘hyperactivity’ but that is my experience.
When I walk I tend to walk fast, when I eat I eat fast, and my mind is often
racing. Some studies do suggest ME/CFS patients are stuck in a chronic ‘fight or
flight’ stress response. Can calming the mind calm the body down too? Is it
possible to turn off this chatter and reduce this underlying nervous tension?
This high activity pattern is very common in ME/CFS. I think that allowing
yourself to have personally enjoyable downtime is one way to infuse a little
more balance in your life. The balance you’re looking for is between activity,
rest and leisure. Once the rest and leisure parts are worked into your schedule,
then the active go-go part of your personality and all that positive excitement
that goes with it can be better maintained.
Also, it’s good to allow at least some time to wind down the internal chatter by
distracting yourself in some positive way -- so that your not forcing yourself
into a new pattern — but just easing into other things that you may not have
normally done or thought about.
Do you think this mental wiredness or nervous tension is a core part of the
disease itself or is it more an inevitable buildup of the all the frustrations
and problems the disease brings with it? Do patients with other chronic diseases
display this kind of pattern or is this something you find more in ME/CFS and
FM?
The tired and wired feeling that people have especially at night before they go
to bed is typical of insomniacs—poor sleepers who may or may not be medically
ill. There’s an interesting theory of CFS/FM that views a broken up sleep
pattern as a primary cause of these illnesses. A study was done by Dr. Harvey
Moldofsky about 30 years ago in Toronto where healthy individuals spent 3 nights
in a sleep lab. During their deep stage of sleep a low level noise was played
that disrupted sleep but did not wake them up. After 3 nights of this, these
subjects developed widespread pain similar to FM. And this study had been
replicated.
In CFS and FM, we also may find a type of disrupted deep sleep called
“alpha-delta intrusion.” So unrestful sleep may play a role in causing pain as
it does in fatigue. Improving sleep may help to lessen pain as well as fatigue.
With gradual,
rather than sudden increases in activity, a daily routine can be developed and
energy level can slowly increase because it is not used up all at once.
You say if you agree with this statement “I do much more when I feel better and
much less when I feel worse” you’re engaged in a negative pattern. But this
seems like chronic fatigue syndrome (ME/CFS) to me! This is how I operate.
What’s wrong with this?
The up and down pattern is certainly the way things usually are for people with
ME/CFS. And I don’t think that lifestyle changes can completely eliminate this
pattern. There are certain things you want to do that you know will lead to a
crash (say a concert you want to attend). But you do them anyway because it’s
important enough to you that it’s worth the consequence. Nothing wrong with
that.
What I suggest to people is that they try to be more consistent in their daily
activities—so they may do only a bit more on a good day and just a bit less on a
bad day. What I often see are up and down patterns where if the energy is there,
the individual runs out the clock on that energy by doing all of the things that
have been left undone until he/she totally collapses—and stays that way for some
time. This pattern doesn’t give the body a chance to recharge. With gradual,
rather than sudden increases in activity, a daily routine can be developed and
energy level can slowly increase because it is not used up all at once.
Check out Dr.
Friedberg’s Website.
You can order books/relaxation tapes there.
Coming up next: Part II