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A PWC* Talks to Psychologists
Mary Schweitzer*PWC stands for person with CFIDS.
This is a working paper. It may be informally circulated with proper attribution, but is to be understood as preliminary in nature. All rights reserved.
Copyright Mary McKinney Schweitzer 1997 .
There are a lot of controversies swirling around this illness - even in terms of which name to use. (Most patients do not like the name "chronic fatigue syndrome" because both the press and medical practitioners tend to get "chronic fatigue" and "chronic fatigue syndrome" confused. CFIDS is preferred in the United States (Chronic Fatigue-Immune Dysfunction Syndrome); M.E. (Myalgic Encephalomyelitis) in Great Britain, Canada, and Australia.
We do not yet know the etiology of this disease, or how to cure it. At best, we can treat the symptoms. Nevertheless, what we do know about CFIDS points to a very serious physiological disorder. As Dr. Philip Lee, Assistant Secretary for Health in the United States Department of Health and Human Services wrote in December, 1996, "CFS is a scientifically recognized disease syndrome. It is a disease entity that manifests itself across the spectrum of symptoms, ranging from people being chronically tired to being wheelchair bound. It is a serious and legitimate diagnosis. It is not, as some have characterized it, some sort of psychological problem. Recovery is slow and uncertain for many clients." At best, only 40-50 percent of patients improve sufficiently to say they are recovered, and no one is ever completely cured. To get a sense of the complex nature of the disease, refer to the symptom list from Katerina Berne, "Running on Empty." For the formal CDC definition of the illness (intended for research rather than clinical purposes, but the only clinical definition we have to use at the moment) link here.
What follows are suggestions toward a working set of clinical guidelines for psychologists and therapeutic social workers. The intent is to provide practical advice as to what to look for, and what can be done to help a patient with CFIDS.
When to suspect CFIDS in a patient, and what to doMany victims of this disease experience it first as profound fatigue/exhaustion/ weakness; cognitive dysfunction and confusion; significant sleep disruption. As you might well imagine, anxiety over the uncertainty of what is going on, plus depression/anger/frustration over loss of control over your life, is also going to be very strong.
Often the patient will be sent by a well-meaning friend or family member, or a family doctor unfamiliar with the symptoms of CFIDS, or perhaps a self-referral after reading a newspaper article on the symptoms of depression, to see a psychological therapist.
It's very important to be familiar with the symptoms of CFIDS - since the patient doesn't know anything about CFIDS, she probably doesn't know that other symptoms she is experiencing have anything to do with the ones she has been bringing up to doctors and friends. The most recent set of diagnostic criteria for CFIDS can be found at .
If the patient seems to meet the criteria of CFIDS, then a referral to a local CFIDS specialist needs to be made so that a proper diagnosis can be found. Who are CFIDS specialists? It depends on where you are, and what doctors in your locality have become interested in the disease. In actuality, it crosses many medical specialties, without a clear home at this time. I am seeing an internist. Infectious disease specialists sometimes work with CFIDS (and sometimes know nothing about it). Immunologists and endocrinologists also may be familiar with the disease. It has to be a doctor who has SEEN several patients with this. Prejudice against this disease remains strong in the medical community: the Mayo Clinic, for example, refuses to deal with PWCs at all.
Once the patient has been diagnosed and is under the treatment of a physician, most likely she (or he) will still need psychological counseling. The object is to help the patient adjust and thrive, even though severely ill.
Differentiating between CFIDS with secondary depression and primary melancholic depression:Differentiating between a patient with CFIDS and secondary depression, and a patient with primary melancholic depression, is extraordinarily important. For example, one of the standard recommendations to patients with primary melancholic depression is to get some exercise. Normal exercise will make most CFIDS patient much, much worse -- indeed, postexertional fatigue is a primary symptom of the disease. A patient with primary melancholic depression will describe herself as feeling sad, hopeless, useless, as well as fatigued. Most CFIDS patients, in contrast, describe frustration at not being able to do the things they used to. They may also feel sad and depressed, but the physical symptoms will have predated the sadness and depression.
CFIDS and the concept of "somaticizing" disorders.CFIDS as a disease has been "feminized" in medical culture to a large extent. As is the case with most autoimmune conditions, there is a higher proportion of women who fall ill with CFIDS than men (although not as great as once thought: the stats currently show 60:40 female:male). That alone might have made CFIDS a "feminized" disease. But it is the disease ITSELF, not the gender of the patients, that is ultimately linked in medical culture to concepts of "feminism" - and hence, matters of little import to "serious scientists".
The person with CFIDS is going to be talking about subjective experiences: fatigue, weakness, pain. These cannot be measured. There is no way to "prove" a patient has CFIDS through a single easy-to-order test. Ultimately, the diagnostician must LISTEN TO the patient to make the correct diagnosis.
In a culture not far removed from rigid perceptions of male/female dichotomies, the very characteristics of CFIDS renders it inescapably "female" in character: Subjective evidence; no fixed cure; no possibility of proof; treatment can only "make the patient feel better": these are "feminine" attributes, and many traditional health professionals are most uncomfortable dealing with them.
An example of the clash between the strongly masculinist hard science approach to knowledge, and the "feminine" nature of this disease, is the way the CDC approached the evidence of a serious outbreak of CFIDS at Incline Village, Nevada, in 1985. At first, they ignored the disease. Finally, when doctors were reporting as many as 180 cases, the CDC arrived, took blood samples, talked to no one about the symptoms, and left. Finding nothing "unusual" in the blood samples, they concluded that there was no "real" disease there.
This was when CDC researchers coined the term "yuppie flu".
CFIDS is thus not only classified as a "woman's disease" (a disease that primarily affects women), but it is also unconsciously perceived to itself be "female" - whether the patient is a man, woman, or child. Part of the process of diagnosing an illness is filtering out "unimportant" evidence. If there is a subconscious belief that the "female" is unimportant in "scientific" endeavors, then symptoms and diseases that are perceived themselves as females are perceived will be automatically assigned the category "unimportant". Consequently, both male and female patients often find that their symptoms are invisible to the medical personnel they come to for help. No matter what they say, the doctor does not listen to it.
In this context, the hypothesis that CFIDS is only a form of "functional somaticizing", or the layman's hypochondria, is both cruel and dangerous. It is no coincidence that such diagnoses are well within the historical tradition of the medical profession (and psychological profession)'s approaches to women's illnesses).
Because the profession of "physician" was all-male (although in practice, most medical treatments were performed at home by women), descriptions of "women's illnesses" were infused with concepts about the essential differences between women and men.
During the 17th and 18th century, the learned physician relied on the classical theories of the four humors to treat his patients; hence poor George Washington was bled to death over a simple case of bronchitis. In that context, how were physicians to understand menstruation? It must be a monthly purging of the natural evils within a woman's constitution. Certainly it was nothing "normal" - when "normal" meant "male".
All theories of hypochondria likewise rest upon a highly deductive mode of reasoning, starting with a theory that the patient is somehow essentially different from the doctor. The central thesis of hypochondria is that the individual is herself ignorant of the true causes of her problems, or that she has a problem at all. In some cases she might even have been accused of inventing the problems to manipulate and mislead others deliberately.
The concept of hypochondria thus gives the medical professional tacit permission to ignore whatever the patient is saying, in favor of a diagnosis based entirely upon deductive reasoning from the doctor's point of view of what it is like to be this woman.
The "invisibleness" that women report feeling in male settings carries over into the doctor's office - and in a final irony, if it is a woman doctor and a male patient, the male patient will experience the same feeling of being invisible, insignificant, incapable of judging for herself/himself the significance of certain symptoms.
The bottom line is that CFIDS is diagnosed by a medical professional specializing in the treatment of that illness. There is no sound medical reason to dally with the false quandary that a patient diagnosed with CFIDS might actually be suffering from a somaticizing condition. And if a psychologist encounters a patient who meets the diagnostic criteria for CFIDS, then it is as important to get that patient to the right medical professional for a confirmed diagnosis, as it would be if the patient appeared to have epilepsy or diabetes.
Once the patient has a diagnosis of CFIDS, what will she need from a clinical psychologist?
Trauma of diagnosis - a CFIDS patient who has finally been diagnosed will at first feel a tremendous sense of relief at finally having been believed. Then the reality sets in, and the patient will proceed through the usual stages of mourning. As one friend of mine with CFIDS put it, it is a disease that suddenly and unexpectedly "steals your life".
Living with the disease - while CFIDS patients have limited choices, we do have choices. Learning to live with the disease involves learning to listen to your body (once again, a necessary stage of treatment that will be hampered if the therapist is thinking "somaticizing".) Many women in their lives have had to keep pushing on through illness - you don't stop being "mom" just because you have a cold. The CFIDS patient has to learn to reverse this and become protective about his or her energy levels. Keeping an activity diary and a symptom chart helps the patient learn her own boundaries, and once you know your boundaries, then you CAN be independent. A good model for such a diary can be found at . Every once in a while it's okay to "push the envelope" gently to see what happens - but only a stage at a time, and if CFIDS retaliates with severe symptoms again, then the patient must drop back a level of activity again.
Many patients learn to be able to choose activities they would like to do - such as a wedding or a reunion - by "banking" energy the week before, and accepting that they will be in worse condition the week after. Thus one lives with the disease, and learns to accept it.
Emotions and stress - since CFIDS patients are dealing with very limited energy levels, as much as possible sources of stress need to be removed from their lives. CFIDS patients also struggle with problems with their emotions. The fatigue itself will make one irritable - and irritableness is a sign to slow down, lie down, stop. But there is evidence that CFIDS patients have trouble with seratonin levels (secondary to the illness), and as a result many are helped by taking doses of SSRIs during the day. This is why it is important to be working WITH a physician or psychiatrist. CFIDS patients overreact to medication, so they must start with very small doses and work their way up. Also, probably because of the NMH problems (neurally mediated hypotension), most CFIDS patients cannot take tricyclic antidepressants during the day.
Sleep Disruption - Sleep disruption is one of the main symptoms of patients with CFIDS. The patient may need to go to a sleep lab to rule out apnea. Other than that, home remedies help some, but most patients need to take a mild antidepressant at bedtime. Both Klonopin and Doxepin are commonly used, but they must be taken in VERY small doses because of the risk of waking up with a hungover, drugged feeling. PWC's who take small doses of doxepin and/or klonopin at night for long periods do not seem to need to increase the dosage, even after years.
The insomnia of CFIDS is not like insomnia from depression or anxiety, when you lie awake at night with racing thoughts. Studies have shown that alpha waves intrude inappropriately when CFIDS patients try to sleep; it makes sleep itself difficult and deep sleep impossible.
Neurally Mediated Hypotension - this deserves a category by itself because of the evidence that so many CFIDS sufferers also have NMH. Aside from medical treatment, NMH sufferers can reduce syncope triggers by simple behavioral adjustments: no standing in the shower-take a bath or use a lawn chair; no standing in lines; beware of heat and humidity. Spend a portion of the day with your feet up. There is a feeling that most CFIDS-NMH patients recognize as "I have to sit down right now this very minute" or "I have to LIE down this very minute". Respect that feeling. It comes from vasodepressor malfunction and your brain is starting to lose blood. Listen to your body. Pain Management - most CFIDS patients experience constant fluish acheyness and malaise, as well as headaches, painful glands that feel swollen even when not (the throat, the armpits, even the groin), and pain at the back of the head. Some of us experience what feels like sinus pain, but the sinuses do not appear to be infected; many of us often feel severe pain in the muscles around our eyeballs. To the degree that the patient's CFIDS is closer to fibromyalgia in the symptom spectrum, then fibromyalgia-type pain can also be present. Aside from treating pain symptomatically, most CFIDS patients learn that pain is the first symptom of having done too much. It is time to stop, to lie down, to step back.
Some patients suffer intense pain, and pain management for these victims is a controversial issue. NSAIDs work for many patients, but they are not without serious potential side effects. The patients with the most severe pain may experience relief only from opiates -- which brings the therapist/physician combination into the realm of contemporary politics. I have heard such terrible stories of human suffering with the extremes of this disease, however, and urge those who work with patients in pain to think first of the patient.
Digestive Difficulties - patients with IBS and bloating symptoms sometimes are helped with Lactaid or other dietary adjustments. In severe cases, patients have had to go on an exclusionary diet and one by one introduce foods to see what they can tolerate. Foods that a patient might never have been allergic for a patient can suddenly become extremely problematic for a CFIDS sufferer. Some patients also suffer from esophagal spasms, which are very painful. Physical Disability - encourage the patient to use a handicapped parking tag if they are finding walking too much - anything to preserve precious energy. A cane can help with balance. Many CFIDS patients use wheelchairs in museums or shopping malls or grocery stores. Once a patient gets over the embarrassment, it is liberating to be able to go places again.
One of the physical aspects of CFIDS (as yet unexplained) is that patients do not metabolize properly. A small minority loses weight; a large majority cannot help gaining weight. There is evidence that CFIDS patients cannot metabolize their own body fat, and that their bodies cannot shift into aerobic metabolism - they go straight from resting metabolism to anaerobic.. Many CFIDS patients also have problems with hypothyroidism, particularly resulting from the development of thyroid antibodies. (Again, this is something that needs consultation with physicians.)
For a CFIDS patient who was active, who was trim, particularly for women, it is insult to injury to gain so much weight and be unable to do a thing about it. So far, there has not been found any effective means for a CFIDS patient to exercise (beyond simple stretching) or to lose weight.
Thus most CFIDS patients (and particularly women) have to deal with self-image problems stemming from the loss of their old physical self. This is another area where psychological counseling is invaluable.
Cognitive Dysfunction - CFIDS patients suffer from serious bouts of cognitive dysfunction: expressive dysphasia, dyslexia, general confusion, attention deficits.
Tricks and accommodations used with ADD and learning disabilities could be of great help here. In some cases, low doses of Ritalin helps, but again that has to be worked out with a physician or psychiatrist. As in the case of Altzheimer's, it is frightening and disconcerting to a competent adult to suddenly lose one's cognitive powers. Fortunately, none of the damage seems irreversible. However, symptoms can continue in severity for many years without relief. A sense of humor really helps.
SOCIAL SERVICES - Many CFIDS sufferers are in need of help with housecleaning, cooking, shopping, and have no idea how they are going to get it. The cognitive dysfunction only makes matters worse. A caseworker can be invaluable in helping the PWC organize his/her new life.
Caregivers - The family needs attention as well as the patient. They have lost a family member; their lives too have changed suddenly. Basic household burdens increase tremendously, and people outside the family often have no idea of the problems the family is suffering - particularly since the public is so ignorant of the parameters of the disease. Family counseling and a caseworker can be helpful with this.
Poverty - Most CFIDS victims struggle with sudden loss of income. It can take two years or more for a CFIDS sufferer to be approved for SSD; most private long-term disability insurers either contest the claim altogether, or try to get it reclassified as "depression and anxiety" so that coverage is only limited to two years. Many lose their jobs before they are diagnosed, and face even more financial difficulties. The stress of dealing with these problems is something the psychologist can help with.
A team approach to managing illnesses - As is probably obvious by now, CFIDS patients need team approaches to managing and treating their illness. There needs to be cooperation among a doctor competent in working with CFIDS; a psychologist and/or family therapist; and social service agencies to assist those PWCs who cannot function competently at home on their own or whose families need assistance from the extra burden.
To my knowledge, no such teams exist. But in all of the cases that we have been discussing today, these types of cooperative approaches are absolutely necessary to taking a productive approach to the patient's situation. Cooperation is necessary within the medical profession to crack the secret code behind CFIDS, because it cuts across the usual disciplinary boundaries. Likewise, cooperation among health professionals is necessary to put together a package that can help a CFIDS patient, no matter how disabled, continue to thrive and live.
The leading cause of death from CFIDS is suicide.
Mary Schweitzer. 1997
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