from Chronic Fatigue Syndrome:
Chapter 3. The Recovery Phase:
When and Why Recovery Happens
"My road to recovery has
been bumpy. Many times I've gone two steps forward and one step back. There
was a lot of fear when I started feeling really good, because I thought
`It's not going to last,' or `Gee, I'm feeling well, this isn't right.'
My self-image was still that `I'm sick.' It took a long time to accept
feeling good without fear of relapse.
"I consider myself recovered. But
I'm not back where I was, I'm many steps further, because I'm a different
person now. To go back to where I was would mean going backwards. I've
grown and learned so much about myself that there's no way that I would
want to go back. All of my attitudes and perceptions were out of whack,
and I really needed to look into them.
"I'm in a whole different place in
my life. I feel I can do everything I want to do, that my life is happier
than it has ever been. I have a better idea of who I am, and I am more
Until very recently, almost all the attention
in dealing with the phenomenon of CFS has been on describing the syndrome
and the search for causes. Very little attention has been given to describing
the recovery process, or explaining why and how people recover. Now, as
we gain more experience with people going into recovery, this subject is
coming out of the closet.
Andrew Lloyd, Visiting Research Fellow at
the Laboratory of Molecular Immunoregulation, National Cancer Institute,
is one of the most articulate authorities on CFS research. Based on his
observations of large scale research both in his native Australia and the
United States, he affirms that recovery is indeed a realistic hope:
"Our overwhelming experience... has been that
when recovery occurs, and we believe that it happens commonly, it is complete,
and one can find no evidence, pathological or hematological, of any disorder
whatsoever... Whatever the process is that produces this fatigue state
appears to be completely reversible."
This perspective is reinforced by results
of a study that followed the course of CFS in 135 patients in Minnesota.
The study was directed by Phil Peterson, M.D., of the University of Minnesota
Medical School and Hennepin County Medical Center in Minneapolis.
The results of that study led Peterson to
conclude that "Although it waxes and wanes, (patients) generally head slowly
out of the woods with this illness. Recovery is... clearly the rule in
the majority of patients..." Peterson summarizes his perspective by stating
that "This is not an interminable disability. Patients do recover gradually."
We have sufficient data and clinical experience
by now to say that beyond the acute and chronic phases, there is a recovery
phase to CFS. In the remainder of this chapter I will describe my observations
and the findings of other researchers, on the recovery phase and the factors
that influence it.
THE RECOVERY PHASE
This phase can be characterized by a gradual
upward ascent toward health, punctuated by relapses and remissions of varying
degrees. While there are still these cycles, the relapses generally become
less severe, of less duration, and the time between relapses lengthens.
People in the recovery phase can often point to
a time when there seemed to be a positive shift or a "turning the corner"
in the overall pattern of symptoms. I have heard patients attribute this
shift to a variety of factors. For some it was a certain medical treatment.
For others the turning point was a major change in lifestyle such as dramatically
reducing work hours, quitting a stressful job, or ending a dysfunctional
Still others point to a change in their relationship
with themselves, a turning inward and involvement in self-help. And in
some cases there is no apparent trigger of recovery, but rather the body's
healing efforts finally seem to gain the upper hand.
During the recovery phase the person learns
how to carefully observe the body's signals, and to monitor its vulnerability,
which is cyclical. They learn to modulate the expenditure of energy, to
anticipate vulnerability, and to balance activity with rest.
Close attention is paid to diet and stress.
Many people develop a more introspective attitude toward life, with a greater
appreciation for emotional honesty. Promotion of health remains in the
foreground of daily experience. As periods of remission lengthen, the person
remains attentive to the body's needs and avoids the tendency to overdo.
The importance of this is reinforced by occasional relapses when vigilance
wanes. Gradually the person establishes a new balance of rest and activity,
with a heightened sensitivity to and respect for the body. Vulnerability
appears to diminish with time, as long as a vigilant attitude is maintained.
What happens at the cellular level during
the recovery phase? This is an interesting question in light of our discussion
in Chapter 1 about "recovery" involving a sense of living in balance and
harmony. In order for symptoms to be reduced, there has to be a re-establishment
of balance and harmony in the functioning of the immune cells. Since the
symptoms are caused by the chemical by-products of an imbalanced immune
response, when your symptoms diminish or disappear this is evidence that
your immune system is re-establishing its own healthy balance.
When does the recovery phase end? When are
you "recovered"? With some illnesses, the use of the word "recovered" is
avoided, for fear of the possibility of a relapse. "In remission" or "in
recovery" are preferred, at least until a substantial period of time has
passed with no symptoms. With cancer, for instance, a remission of symptoms
for five years is generally considered a recovery.
With CFS, however, there is no consensus on
when a person is called "recovered." This is complicated by the cyclical
nature of CFS. Relapses do occur during the recovery phase, though they
may be relatively minor and short-lived compared to the debilitation occurring
in the chronic phase. Relapses can even occur after one has recovered a
satisfactory level of functioning and a basic sense of control and balance.
Again, however, these relapses are likely to be relatively mild, and serve
mainly as reminders of the lessons learned during the recovery process.
I do not go along with the twelve-step notion
that once you are in a recovery process you will be "in recovery" for the
rest of your life. Many former CFS patients have convinced me that recovery
is a state that is attainable, and from which you can get on with your
life. Sarah, who was one of the more severe cases I have worked with, tells
"I consider myself fully recovered. I am able
to perform all the functions that I was able to do back in 1985. My thinking
is clear and my energy level is very high. I keep on top of things now
by not over-doing, and this may be the key for me: I'm no longer interested
in testing my limits."
We are now able to think in terms of a three
phase model for this disease. Keeping in mind that there are wide variations
among individuals, the figure below represents a composite or a general
pattern of progression I have seen based on my clinical obeservation and
the trends in the research.
As with cancer and AIDS (and there have been cases of HIV positive people convertig to HIV negative), recovery from CFS
is sustained best in people who have made profound and significant changes
in their lifestyle, diet, and self-care. The degree to which relapses are
possible later in life is unknown.
How Long to Recovery?
It would certainly be reassuring to have a
fixed time frame for the course of CFS. This would give a sense of predictability
to the experience, reducing some of the anxiety about the unknowns of it.
Again, however, the tremendous variation among individuals must be taken
The multi-causal perspective would remind
us that recovery time is affected by many different factors. These include
genetic factors, self-care and self-help, medical treatment, lifestyle
change, ongoing stresses, and perhaps even the individual strains of the
agent(s) triggering the syndrome, the numbers or intensity of exposures
to disease triggering agents, and perhaps many other factors. There are
three factors, however, which stand out in predicting time to recovery:
initial severity of symptoms, medical treatment, and psychological adjustment
to the diagnosis.
Illness Severity and Recovery Time
While we are still accummulating data on this
subject, evidence suggests that both the severity of your symptoms and
how long you have had them may go a long way toward predicting recovery
time. One of the more helpful treatments of this issue is offered by David
Bell, M.D. Dr. Bell was the primary care physician in the Lyndonville,
New York outbreak of CFS in the mid-1980's, and was a collaborator in the
Wistar Institute study of the possible retrovirus involved in of CFS. He
groups patients into three rough categories:
Group 1, mild to moderate symptoms,
good prognosis for return to normal state without medical treatment.
Group 2, moderate symptoms, prolonged course (have been ill five
years or longer), prominent neurological symptoms, and had a gradual onset
of symptoms. These are less likely to experience remissions without medical
Group 3, severe symptoms, small chance of
recovery without aggressive treatment.
Dr. Bell has offered a rating scale, based
on activity level, to help in assessment of illness severity and in determining
to which of the above three groups a patient might belong:
0: Entirely healthy with 100% activity and no symptoms
1: Increasing levels of symptoms
2: 75% activity, not able to keep up with normal level of
3: 50% reduction in activity with moderately severe symptoms (by definition,
a diagnosis of CFS requires this for 6 months)
4: More severe reduction, with more severe symptoms
5: Severely ill, bedridden
This scale is useful in helping relate the severity
of illness with the course of CFS. In one study, Dr. Bell followed a group
of eighteen children in the Lyndonville outbreak. The average age at onset
of symptoms was 11 years. Bell reports that most of the children had reached
Stage 4 or 5 on the severity scale, but most of these had returned to at
least Stage 2 within three years from onset. Only a few were still in Stage
3 at the three-year mark. Interestingly, however, while all the children
showed gradual improvement over the four years of the study, and most had
reached Stages 1 or 2, none considered themselves completely free of the
In another study, Carol Jessop, M.D., an internist
and associate professor at the University of California-San Francisco,
used Bell's five point scale to evaluate the course of 1,324 adult CFS
patients between 1983 and 1990. Seventy-five percent of her sample were
women, averaging 39.6 years of age.
This is the largest sample studied to date.
Her findings were as follows:
84% had recovered to Stage 0, 1 or 2, working
thirty to forty hours per week.
30% recovered to stage 0, considered fully
recovered, which Jessop defines as eighteen months free of symptoms.
For those 30%, the average length of time
to reach stage 0 was twenty-nine months.
44% of the "recovered" patients still experienced
some recurrence of symptoms with pre-menstrual stress, surgery, or other
While these two studies dealt with very different
patient samples, there is a consensus that the course of CFS is similar
for children and adults. There are some generalizations we may make. One
is that there is a tendency for improvement over time for most patients,
although it is likely to be slower in more severe cases. The other is that
even with substantial improvement, there can remain some vulnerability
to symptoms, although their severity may diminish over time.
Generalizations about the course of CFS are
helpful for getting a realistic perspective on what you are up against.
However, the usefulness of statistics is limited when we start considering
the unique individual. Obviously, statistics are based on averages of many
people, and may or may not fit your personal experience.
Medical Treatment and Recovery Time
Because research in medical treatment of CFS
is in its infancy, we do not yet have data to say precisely how much particular
medicines speed recovery. As Bell states, "There is a huge spectrum of
disease severity in CFS, and many patients with this condition may improve
to a normal functional state even without treatment." Still, there is no
doubt that many people with severe illness have been helped immeasurably
by some of these treatments.
There are no proven "cures" so to speak. Most
current treatments focus on symptoms, with varying degrees of success.
It is beyond the scope of this book to discuss or recommend specific medical
treatments. An excellent summary of current medical treatments is provided
on the CFIDS Assocation
of America web site.
The types of medical treatment can be divided
into four categories which are broadly outlined below.
The first are those intended to relieve symptoms.
At this writing there is no acknowledged treatment for the most common
of the symptoms, fatigue. Other symptoms do have effective treatments.
While initially we may think of treating symptoms as only palliative, its
importance to recovery should not be underestimated.
For example, the single most important symptom
to treat is the sleep disturbance. If this is treated effectively, getting
good quality rest will definitely speed the recovery process. Drugs such
as tricyclic antidepressants, given in doses much smaller than would be
used to treat depression itself, have been successful in treating the sleep
The pain of myalgias and arthralgias has been
successfully treated with nonsteroidal anti-inflammatory drugs. Here again,
to the degree that such pain impairs good quality rest, such treatment
can contribute indirectly to recovery.
A second type of treatment are those intended
to directly intervene in the disease process. These are mainly experimental
drugs at this time, and include immune-modulators like Ampligen, whose
purpose is to calm down and rebalance the immune responses. Ampligen also
has antiviral properties, as do gammaglobulin and Acyclovir. As more is
learned about the nature of CFS and how to heal the immune system, it is
likely that direct interventions like these will become more available.
Third are those treatments which deal with
related conditions. Problems such as yeast overgrowth, intestinal parasites,
and Hashimoto's thyroiditis are not uncommon in people with CFS, and can
themselves contribute to chronic immune activation. Some physicians report
radical improvement for patients who show evidence of these conditions.
Dr. Jessop reports patients' cognitive disturbances have improved with
The detection of yeast overgrowth and parasites
requires the testing of both a swab sample from the rectal mucosa, and
a purged stool sample. The latter is necessary because, as I can tell you
from personal experience, the two types of samples can give very different
results. Fortunately we have effective treatments for yeast overgrowth
and parasites. Testing for Hashimoto's thyroiditis requires both a thyroid
function test and a thyroid antibody test. There is also effective treatment
for this condition.
Fourth are treatments intended to strengthen
the overall host resistance of the person. These include homeopathy, acupuncture
and Chinese herbs. These methods are based on their theoretical effects
for enhancing and harmonizing all the body systems. This is in contrast
to the other treatments which target a specific system, symptom, or pathogen.
Psychological Factors and Recovery Time
What role do psychological factors play in
the progression to recovery? And in sustaining recovery? Can you accelerate
your movement into and through the recovery phase? CFS is clearly not a
psychological illness, and anyone who thinks so is sadly misinformed. Yet,
it can be argued that psychological factors have the greatest impact on
recovery. This is because compliance with medical treatment, lifestyle
change, and self-help all originate with attitude and behavior change.
For many people the recovery phase begins
with a shift of attitude in which they decide to take an active stance
toward health. This often entails a radical re-evaluation of lifestyle
and priorities. Typical changes have involved shifting from putting others
first to acknowledging and asserting one's own needs; clearing up communication
or festering conflict in relationships; altering nutritional patterns;
quitting or cutting back on working hours; and setting aside time each
day for self-help practices.
Often there are emotional or relationship
obstacles to such changes which must be resolved. Linda, for example, reported,
"The criterion I used to get healthy was: `Whatever or whoever gives me
energy, do that or be with that person. And whoever drained me, avoid them.'
I absolutely had to avoid my ex-husband. I could see very clearly that
ours was a toxic relationship, and that I could not be healthy and have
him in my life."
Many of the principles used in coping with
other illnesses apply directly to CFS. The cancer self-help movement and
psychological research with cancer have given rise to the concept of the
"exceptional cancer patient." This is the person who actively attempts
to defy the statistics or the prognosis.
In my experience, there are exceptional CFS
patients as well. They take an active role in promoting their own recovery
through self-help and lifestyle change. Rather than taking the attitude
that their recovery depends on medical treatment alone, they become active
partners with their physicians and do what they can on their own to promote
healing. As with cancer, AIDS, and other serious illnesses, the course
of CFS is affected to a great degree by the coping responses of the individual.
Clearly CFS affects the mind and spirit. We
already know that the disease process causes lesions in the brain tissue,
leading to cognitive dysfunctions of various kinds. However, the mind and
spirit also influence the physical disease process. This takes place in
a couple of ways. First, the emotional distress the may come simply as
a result of having a chronic illness may actually be a further burden for
the body. In a sense, it is like being depressed, and then being depressed
about your depression.
Second, your attitudes and emotional state
determine whether your embrace the recommended behavior and lifestyle changes,
which themselves will then help lay the groundwork for your recovery.
One of my patients, Sarah, states: "I believe that the gammaglobulin
treatment had something to do with my recovery. But I also believe that
the best drugs in the world would not have worked if I'd had a pessimistic
attitude. I had to believe I could can get better, or that I could cope
with what I had."
This perspective is reinforced by another
patient, Debbie, who says, "I am convinced that the medical treatment would
have not been sufficient without me changing my emotional outlook."
MAKING RECOVERY LAST
As I have already stated, a classic mistake
people with CFS often make is to think recovery means "returning to how
I was living before I got sick." The person will seek to recreate the conditions
in which illness initially developed, and will of course relapse. Many
are presented with this lesson repeatedly, until they shift their criteria
for what "recovery" means. It is not desirable to return to "how it was
The message of CFS is change. In this context,
there is no turning back the clock. There is only growth, renewed sensitivity
to oneself, and vigilance toward maintaining balance in living. This entails
a new appreciation of the quality of life, as opposed to mere quantity.
While the person may have been able to run five miles a day before developing
CFS, he may now jog two miles and savor every step, stopping without being
exhausted, and appreciating the exhilaration it brings.
What is recovered is a sense of balance and
control over that balance. With time he may feel able to add to the number
of miles, but his orientation is now toward living in balance, rather than
In a practical sense, this means making conscious
choices each day to pace yourself, moderate your behavior, and anticipate
your vulnerability. Those who practice this kind of vigilance have shown
the best success in sustaining recovery. For example, Tina, a management
consultant, tells us:
"I can tell when I'm vulnerable because I
get a mildly sore throat. I recognize it and I nip it in the bud before
it can get established. The shift for me has been in admitting something
is going on rather than being angry or denying it.
"Then I take steps to prevent relapse. If
there is any stress going on, I just get myself out of it. I start taking
better care of myself, get extra rest, and I can usually just skip past
it. I rarely end up in bed anymore, but may just have a very mild relapse..."
THE BALANCING ACT
Most of us can tolerate adversity much more
easily if we know it is going to pass in a predictable way, and can look
forward with reasonable certainty to a time when it will be behind us.
Since this is difficult with CFS, there are a variety of responses possible
for coping with this uncertainty.
One is to engage in a determined quest for
answers. There is, however, a risk that getting lost in this quest can
be overwhelming. Attempting to stay on top of all the latest research developments,
the latest scientific conferences, and the latest news stories in the media
can become very time consuming and stressful, further exacerbating symptoms.
If one is not careful, it can reinforce a belief that one's deliverance
from the syndrome is entirely dependent on resources outside oneself.
The opposite extreme, to give in to a sense
of helplessness or impotence, is also detrimental. This too can add unnecessary
stress to the experience of CFS. And it also reflects a belief that forces
outside one's control offer the only hope for relief or help.
A third path is to balance the quest for external
support with the development of internal support. When and if medical breakthroughs
occur, this is good. In the meantime the centerpiece of your healing program
must be self-empowerment.
Audio CD Program
The Home Self-Empowerment
For information about Dr. Collinge's
four-CD audio program of inspirational talks and guided self-healing
exercises that accompany this book, click here.