My Unorthodox Treatment for Chronic Fatigue Syndrome (ME/CFS)

I first got sick six years ago, in late 2006. I was a junior in high school: captain of the cross country team, varsity soccer player, president of the student council. I was a go-getter, I had no time for this strange and unforgiving illness.

I checked all the familiar boxes on the way toward diagnosis: six months of being too exhausted to attend school, the all too many visits to doctors and specialists, none of whom understood what was wrong with me.

In that, I think my story will be similar to most others. I saw about 15 doctors before I found one that thoroughly and holistically understood my condition. One of the doctors diagnosed me with depression: he did not receive a follow-up visit.

Today I am not necessarily “well,” but I’m living a nearly fully functional life. Aside from my pre-illness goal of becoming an Army Ranger, I’m more or less capable of doing anything I want: skydiving, bungee jumping, horseback safaris in Africa. I’m now training for a half-marathon.

I know that every CFS patient has a distinctly different version of the illness. I myself have had what feels like different versions of it. So I know there is no one-size-fits-all formula for beating it. What I want to do, though, is say something that few doctors will be able to tell you. I hope that I can explain how to think about the illness, and how to contextualize the experience of living with it into a larger worldview. By re-thinking our way of interacting with it, we can deprive CFS of much of its power over us.

I say this because I have only a layman’s medical background. I recently graduated from the University of Georgia with degrees in international affairs and in English literature. My perspective is steeped in those fields, and I think they both provide as good a way of grappling with these horrible questions as any background ever could.

My friends in medical school tell me that they are trained to look for “horses” and not for “zebras.” CFS/ME, unfortunately, is the ultimate zebra. Zebras are rare and odd; they fall through the cracks. Doctors are trained to look for the simplest answer. CFS/ME, however, either has a complex answer, as I believe, or no answer (yet), as others will contend.

To me, though, the good news is that CFS/ME is really only a zebra to the current Western bio-medical establishment. I will outline four different approaches to thinking about the illness that either critique or transcend biomedicine. One is a literary approach. The second can be considered an anthropological or philosophical approach. The third is medical, based on what my CFS/ME specialist provides. The fourth is a practical, do-it-yourself method. The DIY method is speculative, but I do strongly contend that in the information age, well-read patients can often be more knowledgeable about their own cases than many specialists. When I was seventeen, I diagnosed myself with CFS via the Internet three months before a medical doctor did. I’m sure many other patients have done the same thing.

I can’t guarantee any of these methods will work for everyone. But at the very least, they should help deconstruct the idea that there’s nothing we can do for CFS/ME.

Literary Method

When I first got sick, I started writing. My horror had no name, the pain had no label. It was much larger than a medical illness. I had an existential philosophical problem. Rendering my troubles verbally was one of the few things I could do to get better. I had to do it. Writing was, and still is, one of the best ways for me to quiet my mind and rest my soul.

I wanted to get better so bad. I remember very distinctly the moment when I went back over the words on the page and thought to myself that the phrasing, the spirit of the words, felt startlingly similar. After thinking about it awhile, I realized that something in what I was writing felt very similar to an essay I’d read the year before in my American literature class: “Civil Disobedience,” by Henry David Thoreau. “Let your life be a counter-friction to stop the machine,” he had written in 1849.

I quickly re-read that whole essay and then moved on to Thoreau’s larger work Walden, the story of how he lived for two years in the woods in a cabin he built himself in an experiment to try and separate himself from modernity. He wanted to re-learn how to live. In the pits of a debilitating illness, so did I.

That book, and my experience of reading its slow, thoughtful sentences, is a metaphor for how to deal with CFS/ME, which medical specialists tell us is a “disease of modernity,” like heart disease, cancer, diabetes, anorexia, and others. These illnesses appear with far greater frequency in modern, developed countries than in poorer countries. If our illness is one of modernity, it follows that we should be able to separate ourselves from modernity as a way to stop it. We can make our lives a counter-friction to stop the machine. We must construct our own Walden.

The first way I constructed my own Walden was through reading.

Left for hours each day alone to contemplate my illness, I often had nothing to do other than to read. I was mostly interested in literature and philosophy (aside from books or articles about health). However, I started becoming more interested in biographies.

To this day, I am still taken with the lives of Theodore Roosevelt and John F. Kennedy. Roosevelt, as a boy, was puny and weak. Larger boys could easily beat him up. He had what we’d now call a severe case of asthma, which was dramatically less treatable then than it is now. He was confined indoors for a large part of his childhood. Eventually his father built an indoor gym for him, and the young Teddy began lifting weights daily. He would essentially re-build his stricken body into a robust force of nature. The weak boy became the vigorous champion hunter, rancher, and outdoorsman that we know him to be today. Through sheer force of will, Teddy overcame an illness that could have sidelined him for most of his life, and for this reason our 26^th president, our most energetic president, remains my CFS role model.

John F. Kennedy, another great American president, was also a sickly teenager. He was constantly in the infirmary of his prep school with some odd ailment or another. In bed with little to do, he spent much of his time reading. He devoured history and biography, becoming a great admirer of Winston Churchill. It is no mistake to say that during his sick days at the Choate School in Wallingford, Connecticut, our 35^th president began to develop a sense of who he was and of his place in history. His illness forced him to become that man, to develop that deeper part of himself. In Kennedy’s sickbed reading, I can see something of myself. It is the same process by which I formed my own self through reading when I was too sick to do anything else.

When I was a sophomore in college, I took a class called “Literature and Medicine.” The professor contended that literature is the best form of preventative medicine, for both physical and mental ailments. “You can either read literature or you can take Prozac,” she told us more than once. I remember the teacher reading a note from a former student to our class, “In my house I now have two medicine shelves in my house. One holds the normal pills like aspirin and Benadryl. The other has the books from your class.”

The book titles on that course’s syllabus were not as important as the process and perspective we learned for contending with the existential horrors and joys of living. The great classics of literature are the titles that build stronger souls. My own tastes range from Plato to Thoreau to Yeats, none of whom were featured in that class but all of whom constitute the most sublime form of medicine. They are an integral part of my therapy when my illness inevitably flares up.

Reading takes us to a higher, better place. And reading stories of human resilience in the face of seemingly insurmountable challenges is the best way for us to prepare to meet our own seemingly insurmountable challenges.

Soon we realize that the process of embracing those challenges makes us who we are. John Solomon, in his Pulitzer Prize-winning exploration of depression The Noonday Demon, puts it this way:

''Curiously enough, I love my depression. I do not love experiencing my depression, but I love the depression itself. I love who I am in the wake of it. . . . I have discovered what I would have to call a soul, a part of myself I could never have imagined until one day, seven years ago, when hell came to pay me a surprise visit. It's a precious discovery.''

Life gave me the sourest lemons, but I thought it was all the more reason to make sweet, sweet lemonade.

The Anthropological or Philosophical Approach

Getting sick set off a long and unending process of constant research to try and understand the historical, cultural, and philosophical reasons why I was ill. At times I was lucky when this great quest dovetailed with my own school assignments. For a high school project, I embarked on a 25-page tour of alternative medicines that was an excuse to do as much work as I could to find an alternative treatment that could work for me.

I did find some relief through acupuncture, Chinese herbs, massage, and other practices. Intellectually, however, I found traditional Chinese medicine (TCM) and Indian Ayurvedic medicine to be much more satisfying than studying homeopathy or aromatherapy. Ayurveda and TCM are appealing because they present totally different systems that compete with Western biomedicine. Patients with CFS/ME are “zebras” to biomedical doctors. However I suspected that other health traditions, themselves having had more millennia of continued historical practice, could be more useful in re-conceptualizing CFS/ME.  I fought for funding for a summer research fellowship after my sophomore year of college and made this line of inquiry my next subject.

My purpose in this essay is not give a full accounting of Ayurveda or TCM, but rather to explain their place in how I’ve learned to re-think CFS/ME. Any number of books or articles are available on these subjects, one of the most useful, for instance, being The Web That Has No Weaver: Understanding Chinese Medicine by Ted Kaptchuk.

Western bio-medical science is largely based on anatomy, and stems from a materialist belief that we can find illness inside the body. My understanding of the ancient Indian health tradition, Ayurveda (literally “science of life”), tells me that illness derives from a set of patterns and forces outside ourselves with which our lives intersect. Another way of explaining this would be to say that Western society trends individualistic, while Eastern cultures generally trend collectivistic, or toward holistic thinking: they see the individual in the context of his society and his surroundings.

Without delving into Ayurveda’s complex Sanskrit vocabulary, I do want to point out that the system is similar to the Greek system of the four humors that dominated Western medicine well past the Renaissance. It is based on the notion that there are overall forces that contribute to illness and that if we re-balance these forces we can cause wellness.

This core concept has some vital reverberations in terms of treatment modality. Rather than a headlong project of trying to discover some pathogen, some virus, of some genetic flaw, the individual healer’s search for the cause of unbalance can be much more out in the open. It is not shrouded in the arcane mysteries of science. It far more oriented toward individual lifestyle, family situation, the society, and the individual’s moral and philosophical outlook. Each of these weighs on health as much as a particular virus might. If we change these aspects of the patient, we can change him such that an illness is much less likely to take hold.

In her 1995 study of Ayurvedic practitioners in India, the anthropologist Jean Langford described healers interviewing patients with the patient’s whole family present at the appointment. It should be obvious that when a patient’s whole family is invested in the process, the diagnosis is more likely to be correct and the treatment regime is more likely to be enforced.

Langford also discussed the case of a patient who returned to his healer saying that he had cured himself of his insomnia such that he no longer needed to take sleeping pills. He attributes the change to feeling “more philosophical,” of having a more cosmic perspective on his problems. The healer encourages the lifestyle change. “Try to be like the Buddha,” he says. “Not that you have to be a Buddha, but follow what Buddha has said.”

Langford boils down one practitioner’s health philosophy in this way:

For Vaidya Sharma the maintenance of health implies also the persistence of joy,

not only in one's organs but in one's mind and soul, the most transpersonal

facet of one's self… Thus the aim of medicine seems to encompass longevity,

happiness, and the good life generally, not only in Vaidya Sharma's perspective,

but in one of the most respected Ayurvedic texts.

Medical Method

I saw about 15 doctors after becoming ill: five different primary care physicians, two rheumatologists, a neurologist, psychiatrist, endocrinologist, dermatologist, infectious disease specialist, a chiropractor, and an acupunturist. I admired their intellect, their passion, and their sincerity. But I saw marginal results from all of them. The dominant image in my mind is of the very last one, a rheumatologist whom I’d been told was a specialist in CFS, putting her face in her hands after an hour-long interview. “I really don’t know what’s wrong with you,” she said.

That’s why February 9, 2008 was such a major turning point in my life. It was my first appointment with Karen Bullington in Marietta, Georgia, in a clinic that was part of the Fibro and Fatigue Centers, a network of twelve fatigue clinics nation-wide, co-founded by Jacob Tietelbaum, a doctor who was hit by CFS in medical school in the 1970s. My physician at the Atlanta clinic was Dr. Bullington, a former Christian missionary, who was also a victim of CFS when she was in medical school. She has dealt with the syndrome to some degree or another for all of her practicing years.

My memory of Dr. Bullington essentially completing my sentences for me contrasts sharply with the previous parade of specialists who had no idea what was wrong with me.

Another major contrast was the first blood test she ordered. The lab tech drained 26 tubes of blood from me, or about one-third of a pint. It was significantly more than any of the previous 15 doctors had ever ordered. She was gathering in-depth data about my whole system, not just one organ system.

A month later, we spent an entire appointment going over the results, which also was a revelation in customized care. Whereas most doctors would shrink from treating me if my blood levels were in the defined “acceptable” range, Dr. Bullington had no problem prescribing a supplement to address a nutrient level that was simply on the lower level of the acceptable range. Also, for instance, she was willing to diagnose me with Lyme disease per the iGenics Labs definition rather than the CDC definition. For anyone who’s dealt with the complexities and controversies surrounding Lyme, getting that diagnosis from a doctor and a long-term antibiotic treatment to address it, should come as no small feat.

All in all, the method succeeds because it takes an gigantic amount of data from the patient and has a pre-existing framework for understanding how each strand of the puzzle is connected in a massive and imposing knot of fatigue. By meticulously unraveling each string in the knot over a period of months and years, many patients, myself included, get their lives back. Most MDs and most specialists fail in treating CFS because they mistake it for a single problem or double problem, perhaps sleep apnea or thyroid issues. They treat the problems they find, but because they cannot or aren’t willing to treat ten or twelve underlying issues simultaneously and in an organized manner, they often can do nothing more than throw up their hands. They often cannot even discover underlying issues worth treating, and that’s why dramatically more subtler and nuanced diagnostic criteria are the first step toward effectively treating CFS/ME.

In the six years I’ve been sick, I’ve had two major flare-ups, one in 2009 and one in 2012. During the 2009 flare-up, Dr. Bullington ordered that same massive blood work-up and revealed a set of several new problems that had somehow cropped up and caused the fatigue crash that had nearly forced me to drop out of college. In particular, one of the problems was a new magnesium deficiency, and she prescribed a magnesium supplement to address it. CFS/ME becomes a dramatically less frightening illness when every twist and turn in one’s case can be traced to a scientifically verifiable piece of data.

The prevailing message from the overwhelming majority of government officials and medical professionals is that nothing can be done about CFS/ME. That’s simply not true. Since being treated, my experience of living with the illness is actually that it is highly understandable and even predictable.

The quest to find a doctor who understands the illness requires much endurance, but it is without a doubt the most important thing anyone with CFS/ME must do to get his or her life back.

The problem, as I’m painfully aware, is that my treatment modality is out of reach for most patients: most, particularly those in foreign countries, don’t live close enough to a proper facility. Even among those who do live nearby, many can’t afford the treatments because they aren’t covered by insurance. Among those who live close enough and who have enough money, it’s still possible that their bodies might not even respond to the treatment.

Practical, Do-It-Yourself Method

Without a doctor in whom you are confident, there are still ways of taking matters into your own hands. And even with the best possible doctor, CFS/ME is never totally solved. However, there are ways forward.

In today’s WebMD world, people have access to an unprecedented amount of medical information, which enables us to make dramatically more informed choices. Our information age allows us to truly hold our doctors accountable.

One of the great fallacies I had to overcome was the belief that a doctor amounts to some kind of “Superman” in a lab coat. Most, smart as they are, are not as smart as you are about yourself. You should never outsource your critical thinking to someone simply because he has a medical degree and is telling you what to do.

Patients can and should engage intellectually with their doctors; indeed, doctors enjoy the rigorous discussion with a well-informed patient.

But no medical doctor and no government bureaucrat should stand in the way of the fact that we, ourselves, are the ones who are most empowered to change our lives and to move forward.

Reading the great stories of heroes who overcame high odds was a wonderful education in the process of improving my own life. In a similar way, reading deeply and broadly about the fundamentals of health and wellness has also been a great engagement in a process toward a goal. Although every new idea I explored might not have borne fruit in my particular situation, I can say with confidence that there was something deeply important about simply taking ownership of my situation and taking it upon myself to solve it myself.

One of the books that bore fruit and continues to transform my life is William Dement’s The Promise of Sleep. Dement was a founder of the field of sleep science and has been a pioneer in the field for half a century. Sleep occupies about one-third of all human existence and it’s a shame people know so little about it. We can all dramatically change our lives for the better if we simply improve the way we sleep.

For CFS patients, I generally believe that about 20% of our problem can be fixed simply by addressing the underlying sleep disorder(s). Patients with a sound understanding of the science are well on their way to part of this solution.

For me, the most revolutionary concept in Dement’s book was sleep debt. We all have a set point of sleep (roughly eight hours) that our bodies need each night. Every minute shy of that set point can be made up. If a person slept for six hours one night, he or she would have accumulated two hours of sleep debt. The good news is that we can simply re-pay the debt by sleeping more the next night.

At the end of each semester of school, I began my sleep vacation. Sleeping for ten hours a day for two weeks, I could make up almost 30 hours of missed sleep. It makes for a vital rejuvenation twice a year. I feel much more at peace after it.

I know that others may find other parts of Dement’s book equally important, particularly those suffering from sleep apnea, narcolepsy, insomnia, or a general inability to get refreshing sleep.

By understanding and correcting part of the sleep puzzle, we should then wonder how much of our life situation we can improve by similarly addressing diet, stress, even posture, and other aspects of our lifestyles.

I would never dream of saying that we could totally fix CFS through this do-it-yourself method, but I do believe we can have a positive improvement in quality of life by embarking on robust scientific studies of each fundamental aspect of our health. This knowledge can teach us easy, common sense fixes to improve energy.

Again, even more important than the actual improvements in quality of life is the belief in our own ability to make improvements. Perhaps the most important psychological approach to my recovery has been to not define myself as sick; rather, however slowly and imperceptibly, I think of myself as always getting better.

We should remember that there is a reason that the Roman Catholic Church deemed despair a mortal sin. Despair is unlikely to lift one out of misery. It is not a path to redemption.

We should better remember Henry David Thoreau’s admonition that “I know of no more encouraging fact than the unquestioned ability of a man to elevate his life by conscious endeavor.”