Readers' Forum

Research and the real world at odds 
When I read the summaries of interdisciplinary posters at the AACFS conference, I was struck by the comments that cognitive deficits of PWCs appear to be more mild than perceived. If all testing is done the way my neuropsychological exams were given, that finding should not be surprising.
 
The neuropsychologist who examined me advised me to show up for testing as rested, relaxed and pain-free as possible. My testing was done under optimal conditions in a small, extremely quiet and comfortable office, with no interruptions and a sympathetic tester. There were none of the typical workplace distractions that you can ignore when you're healthy-no radio going in the adjacent cubicle, no interruptions from telephone calls and colleagues dropping by, no pagers beeping, no mail or interoffice memos. In short, the testing conditions didn't come anywhere near approximating the chaos of the typical office.
 
When I was healthy, I could easily manage to talk on the phone, read the newspaper and listen to the radio-all at the same time! Since I became ill with CFIDS, just doing one of those requires all the attention and concentration I am capable of, and sometimes more.
 
While my neuropsych test was helpful in documenting the typical CFIDS pattern of cognitive dysfunction, I, too, noticed that the resulting deficits reported seemed milder than my actual experience had proven them to be. Perhaps the vast difference between testing and actual real-world conditions could account for the discrepancy.
 
On another topic, I remain unconvinced by the assertions of various rehabilitation counselors, physical therapists and others that most people disabled by CFIDS could return to work. While I would like to believe and I continue to hope that I will return to work, I keep noticing that these people nearly always qualify their statements about return to work with words like "in a reduced capacity," "part-time," "flexible work hours," "reduced physical demands," and so on. This dodges the question of whether a complete recovery and return to full-time work is possible, and it encourages the idea that PWCs simply don't want to work. It also ignores the reality of disability rules and regulations.
 
I think that all of us PWCs would love to recover and return to full-time jobs and normal lives. However, in order to keep our meager disability benefits-which we paid for when we were healthy and working, and which are so difficult to collect-we must be classified as completely unable to work at any occupation in the national economy. There is no allowance for part-time work. You are either completely disabled or able to work full-time. Implicit in these rules is the recognition that most if not all employers want employees who will reliably perform their jobs, not people who might be able to work 10 hours one week and no hours the next.
 
Counselors, therapists and others who push part-time work do nobody any favors. Surely they don't expect us to magically be able to make ends meet working perhaps 10 hours per week when it took 40-50 hours a week to make ends meet before we got sick.
 
I don't deny that certain cognitive and physical therapies can be beneficial to PWCs; many of us benefit from re-arranging the way we think about and do everyday tasks. Improvement in the quality of life is a worthy goal. But I am not convinced that these therapies are going to be the "magic bullet" that somehow returns us to full health and full-time employment.
Name withheld on request

CBT is one of many tools 
As a person with fibromyalgia who is also a psychotherapist with a small private practice, I would like to respond to Simon Franklin's letter about cognitive behavior therapy (CBT) in the Jan./Feb. 1999 issue.
 
In recent years, CBT has become a very widely used body of therapy techniques, in part because it lends itself to measurable outcomes and is therefore popular with insurance companies, but also because it has proven to be helpful to people with a range of problems and needs. Mental health professionals who use CBT vary from those who define themselves as "cognitive-behavioral therapists" to more eclectic people like myself who regard the techniques as one of many possible tools that we use in our work. Among therapists there is also, no doubt, a range of knowledge about chronic health syndromes such as CFIDS and a range of attitudes toward people who struggle with these chronic illnesses. I would urge anyone seeking counseling or therapy to find out early on where each prospective helper stands in terms of such knowledge and awareness.
 
CBT as an approach to psychotherapy focuses upon helping the client to correct irrational cognitions-thoughts, beliefs and attitudes-that interfere with his or her sense of what psychologists call "self-efficacy." In layman's terms, this might be referred to as a sense of control over one's life. For a person with CFIDS, examples of dysfunctional cognitions might include thoughts such as "I can't work at my job anymore, therefore I have no value as a person," or beliefs like "Sick people never achieve their goals." It is not hard to imagine how replacing cognitions like these with more positive ones might do a lot to improve a person's quality of life, whether they suffer from chronic pain, CFIDS, cancer, diabetes or even a mental illness such as depression, in which the dysfunctional thinking is part and parcel of the illness.
 
To my mind, the use of CBT or any other form of mental health treatment with a person who has an illness does not imply that the practitioner believes the illness is psychological in nature or that it can be "cured" by the treatment. Effective psychotherapy is only one of a number of non-medical interventions that have helped many PWCs rebuild shattered lives and identities. Others would include such things as educating ourselves, improving communication with family members, seeking support of others who share our diagnosis, becoming involved in public education and advocacy, etc.
 
Perhaps more to the point is that most of us who live with chronic illness feel that research dollars should be spent seeking effective medical treatments for our very real and challenging illnesses, rather than investigating the usefulness of psychotherapy for people who must cope emotionally with these debilitating conditions.
Emily Murphey, MA, Montpelier, Vt.

Depression is a real illness, too 
I would like to address an issue that has been on my mind for some time. Very often in my reading about CFIDS/fibromyalgia, I find the statement: "CFIDS is not just depression; it is a real illness." I fully understand that PWCs are looking for the recognition that this life-altering illness deserves. We have all had previous lives we have lost; we have all been told we are just stressed out or crazy. However, in an attempt to affirm our own illness, we are perpetuating the discrimination we are trying to avoid.
 
I have suffered with endogenous depression for most of my adult life. I worked very hard at hiding this, because psychiatric illness is not acceptable in our society. I was very good at this, although the isolation and energy spent on this cover-up greatly added to the nightmare of this illness. Then two years ago I came down with a killer flu that never went away. A year later I was diagnosed with CFIDS/fibromyalgia. No further explanation needed there.
 
Try to remember how close the mind-body connection is. Obviously, if there is a problem in the central nervous system or immune system, it can wreak havoc on every system in the body. I believe that in time we will see that the depression that follows CFIDS is associated with the internal factors (neurotransmitters, limbic system dysfunction, etc.), as well as the normal grief reaction to the devastating losses that come with CFIDS.
 
What I ask is that we learn through our suffering to be more compassionate and empathetic to others with illness, pain and loss of any kind. It should not matter that our illness is physical or psychological in nature. This discrimination against mental illness and CFIDS-related illness has to stop somewhere. Please help make that change. I have been at the mercy of both, and although CFIDS robs you of your life, a major depressive episode is a trip to hell.
Teri Cordaro, Natrona Heights, Pa.

Spokesperson needed 
I would like to see The CFIDS Association of America have a national spokesperson. Currently there are athletes and movie stars and celebrities who have CFIDS whose fame could help put us in the national spotlight. I have never seen a public service announcement on TV or a locally sponsored event such as a 10K run. These avenues can generate income as well as create awareness.
 
I would like to see a more aggressive media and marketing campaign. Occasional newspaper articles are nice, but I think it is time to promote ourselves in a less passive way.
Deborah Bryant, Dallas, Texas

Thanks for recognizing supplements 
The article by Darryl See, MD, in the Sept./Oct. 1998 issue reinforced my feelings for The CFIDS Chronicle as a positive source of support in my life. The article addressed the benefits to CFIDS/fibromyalgia patients of glyconutritional supplements, specifically Mannatech's Ambrotose, and his recent studies.
 
I became ill in 1995 and spent all of 1996 at home, out of work, striving to climb out of the dark hole that is CFIDS. My wonderful and supportive life-partner is a Mannatech distributor. With the help of my physician, he developed a daily regimen of supplements and vitamins for me, which we refined by trial and error. I totally attribute my ability to return to work to glyconutritional supplements.
 
A letter in the Readers' Forum in that issue related directly. The New Zealand writer states: "If allopathic medicine offers no cure and no treatment, why not risk turning your gaze to some things that do work?"
 
We should all welcome those individuals, such as Dr. See, who are willing to "turn their gaze" and are taking the professional risks for us.
Susan A. Warner, Farmington, Mich.

A 'super' name 
I came down with CFIDS in 1979 and recall being excited to read an article by Marc Iverson in which he wrote something like, "If my house had been on fire, I wouldn't have been able to get out of it." That was exactly the same example I had been using to describe my weakness, so I knew our experiences were similar.
 
Because my weakness would come on so suddenly and disable me completely, I was put in mind of Superman suddenly on all fours on the sidewalk, helpless against his enemies, powers vanished, cape drooping, when exposed to kryptonite. It that isn't a vivid image of CFIDS, what is? And so I called my illness "Kryptonite Syndrome." Well, it beats chronic fatigue syndrome.
 
Our mission now: Find out what that kryptonite actually is.
Maggie Ogilvie, Sierra Madre, Calif.

A clarification 
We have seem some concern expressed, although not directly to the Chronicle, about the comments of several doctors in the Jan./Feb. 1999 issue (page 23) advising against excessive rest. Please understand that neither we nor the doctors who were quoted are advocating the other extreme--excessive exercise. Rather, their advice was to be as active as one can be without crashing, resting when necessary but not overdoing either activity or rest. The doctor’s comments were made at the AACFS conference in response to a question from a patient about the appropriateness of aggressive rest therapy.