If you or someone you know is living with CFIDS, you have either experienced or observed the chronic exhaustion, brain fog, debilitating stress, and other symptoms which characterize this illness. As you may already know, CFIDS is a complex, mysterious and long-term condition which relatively few physicians understand how to remedy. Moreover, despite the fact that the U.S. Center For Disease Control issued a diagnosis definition for CFIDS several years ago, many doctors refuse to believe that the disease truly exists. Among some physicians and the general public, there is still a widespread and misguided belief that CFIDS patients are mere neurotics with problems “all in their heads.”
Given the difficulties surrounding successful diagnosis and treatment of CFIDS, it’s hardly surprising that the doctors who specialize in treating it must navigate through medical mysteries, intellectual challenges, and occasional opposition or derision from their colleagues. While many physicians chose medicine because they wanted to heal people, “CFIDS patients often frustrate physicians because they do not always respond promptly to treatment,” says William Crook, M.D., of Jackson, Tennessee. Crook, a renowned authority on yeast-related illnesses, is the author of “The Yeast Connection” which has sold over one million copies. He has also written several other books, including “The Yeast Connection Handbook” and “Women And The Yeast Connection.” “It’s hard being a physician to CFIDS patients because you want them to respond promptly to treatment, you want to satisfy the patient and know that you’ve succeeded, but they can often take considerable time to improve,” he says.
As it happens, physicians who treat CFIDS patients often undergo a certain psychic wear and tear that other kinds of doctors may never encounter in a lifetime of practice. “Patients with CFIDS, fibromyalgia and yeast conditions take up a lot of office time in order for the physician to do an adequate job,” says William Crook, M.D., of Jackson, Tennessee. “I have cared for many CFIDS patients and have found it extremely satisfying but difficult, because the time demands can be so substantial.” Part of the problem is that physicians are forever pressed for time: they are usually paid for procedures and not paid proportionately for the time they spend with a patient. This is especially true in managed health care systems.
“Managed health care has unfortunately diminished the options for patients and doctors. I couldn’t survive it psychically…six months was all I could handle,” says Jay Goldstein, M.D., of Anaheim Hills and Santa Monica, CA. The author of several books about CFIDS and founder and director of the Chronic Fatigue Syndrome Institute, Goldstein’s brief involvement in “a mini-HMO arrangement, an IPA,” occurred in 1983. “I hated having to make the bottom line, rather than the patient, be the most important concern,” he recalls. “I’d lie awake at night, wondering if I missed a potentially lethal diagnosis because I hadn’t ordered a CT scan for a patient since I’d been trying to cut costs.”
For physicians who treat CFIDS, it can be very stressful balancing their patient schedule to make enough money to pay rent on the office and pay staff salaries, as well as support a family. According to Dr. Crook, “I’ve actually had kind, compassionate internists on our referral list tell me, “Please take me off your list. I simply can’t afford to see CFIDS patients…I need to set aside sufficient income to educate my children.” Perhaps the time-consuming and profit-gobbling aspects of treating CFIDS patients help account for many physicians’ rejection of the authenticity of the CFIDS diagnosis, as well as their refusal to treat such patients. “Any physician who truly cares about healing finds it dispiriting and wearing to hear other doctors say that CFIDS doesn’t exist because a disease marker has yet to be found and there are no laboratory tests for the illness,” Crook says.
Some of the therapies which help CFIDS patients include avoidance of foods that cause sensitivity reactions, anti-yeast medications, dietary changes and nutritional supplements including vitamin B12 injections and CoQ10. “Traditional conservative physicians may look askance at the physician who treats patients with these various interventions. They may consider him or her to be a “nut.” No physician likes to be regarded in such a manner,” says Dr. Crook. Being looked upon as an outlaw or a weirdo by one’s medical peers “can be disturbing, and when the same CFIDS doctor factors in worrying about how many CFIDS patients he or she can help while still surviving financially, they can feel overwhelmed, because more patients may come in than the physician can afford to treat.”
“One of the great satisfactions of working with CFIDS patients is that given enough time, I can help clear up some of their health problems and help them manage their illness,” says Dr. Crook. “It feels rewarding to make your patients feel better.” Although a medical colleague once told him years ago that his practice with CFIDS and yeast-weakened patients qualified him as “a voice crying in the wilderness,” Crook is proud of his pioneer status. “I recently wrote him and said that I was still crying in the wilderness. I would like to present my observations to medical students someday.” For now, Crook is content to continue lecturing, writing and publishing books through his own company, Professional Books, based in Jackson, Tennessee. “I can reach a huge number of people via my writings,” he says. “I just hope doctors, as well as patients, read them and benefit from studying the cases I discuss.”
Dr. Goldstein, who has been treating CFIDS since 1983, when the condition was still called chronic mononucleosis, formerly worked in family practice and taught biological psychiatry at the University of California at Irvine. “Although I was in family practice, because of my teaching biological psychiatry, many treatment-resistant patients were referred to me.” Goldstein says that he found he could significantly help the vast majority of the people who came to him. His reputation grew accordingly: “Whereas I started out seeing 1 or 2 treatment-resistant people a day, by 1986 there were so many people calling that it became 20 or 25 patients a day. My office started booking appointments every 15 minutes but this didn’t work because these patients take an hour or more to give their history…”
Goldstein remembers feeling overwhelmed by trying to best serve both his family practice patient needs and those with chronic fatigue. “The needs for chronic fatigue patients are so much more complex compared to someone, say, who has a sprained ankle. And that person with a sprained ankle didn’t want to wait for three hours to be examined by me,” he says. “I found myself running three hours behind and this felt very stressful. The patients weren’t satisfied, either. I had to cut them off and run to the next room to see the next patient. I hated to do that.” After restricting his practice to chronic fatigue patients in 1987, Goldstein then encountered a new problem: “…It used to take two or three months to get an appointment to see me…that was aggravating for patients and me, it made all of us unhappy,” he recalls. “The good news is that it now takes two to three weeks to see me.”
Both Crook and Goldstein lament the fact that insurance reimbursement for CFIDS patients is very poor or non-existent. “This is another stressor,” says Dr. Goldstein. “By the time they reach my office, patients are often down and out, they’ve been abandoned by their insurance companies…they’ve always exhausted orthodox resources, they’ve seen ten or twelve doctors and I’m at the end of the funnel.” Coming from out of town or other countries, Goldstein’s patients typically schedule appointments with him over the course of a week. “After a week, 75 to 80 percent are between significantly improved and almost all better,” he claims. After the third visit, however, the improved patients often sadly announce that they can’t afford to continue treatment due to lack of support from medical insurance companies. Consequently, Goldstein makes the personal sacrifice of seeing about one quarter of his patients for free, or for a nominal amount, such as ten or twelve dollars a visit. His exceptional actions are motivated by compassion and a desire to heal the afflicted. “I do this…even though I’m making less than half of what I was making when I was in family practice…because I know if I stop treating these people, I’m condemning them to a life of horror.”
Because the patients seen by Goldstein are frequently in desperate physical and mental shape, the drama quotient in his practice runs at a high pitch. Almost all of the patients he sees have been on anti-depressants, or are presently on anti-depressants. Many of them have also undergone electroshock therapy by the time they reach him. A physician treating cases like these must chart his own course: there are no reference books to consult for guidance on how to manage these extreme cases. According to Goldstein, none of them yet cover the complexities of CFIDS including its various neurological or psychiatric elements, such as severe depression.
With great deliberation, Dr. Goldstein “must carefully weigh each case to determine what is a scientifically rational treatment. I consider all the risks and the benefits,” he explains. “If there is an adverse outcome, I’m a lot more exposed, more potentially vulnerable.” Because Goldstein specializes in treating patients who have never been helped by other doctors and medicines, he claims, “There is a big potential legal risk associated with every patient I treat…” Moreover, he observes, “Treating severely depressed patients involves a big risk among certain patients for suicide. This is terribly sad for the patient, and for the doctor.” Goldstein reports that he receives about two or three calls each week from people claiming that they’re going to kill themselves if they can’t see him as soon as possible. Fortunately, no one has ever done this after calling him. “I often talk to people who are at their wit’s end and I help them calm down and schedule an appointment for them.”
A few of his patients, however, have broken under the stress of living with chronic fatigue. “About three patients I’ve seen [from around the United States] have returned to their homes and were unable to find treatment and so committed suicide,” he laments. “As a physician, this is very hard to take, because I know I can help people.” About one or two times a week, a new patient proclaims, ‘You’re my last hope. If you can’t help me, I’ll kill myself.’ Oftentimes after Goldstein successfully treats a patient, they’ll tell him, “If you hadn’t been able to help me, I would have killed myself.”
The satisfaction derived from healing the sick, coupled with the enormous gratitude he receives, inspires Dr. Goldstein’s remarkable commitment to CFIDS patients. Although he says he works about seventy hours a week and doesn’t get to see his family enough, “I keep on going because it is so satisfying to help people feel better. Most people who come to me feel better within one to three days, and sometimes it may take a month or two,” he says. “Imagine how it feels to give a patient some medicine that you think will help them and hear them tell you a half an hour later that they feel their life has changed. To see that happen to a patient is completely gratifying.”
See related article(s): Coping with CFIDS