Introduction: Overcoming Chronic Fatigue Is Important—and Doable

At my recent medical school reunion, I toasted with the same people I had sat with 35 years earlier. We reminisced about when we clutched our pens while listening to our first lectures on human embryology and when we first cut into the sternum of our willing, forgiving cadaver. In the years since, my lab partner became a noted radiologist, and the president of our class became a superb orthopedic surgeon. One friend has delivered 4,000 babies; another is a top cancer specialist. One of my former classmates chairs a prestigious university’s department of internal medicine, but the most important graduate may be the one practicing family medicine alone in a tucked-away small town where medical services are sparse. As for me, I founded and direct the Rochester Center for Behavioral Medicine, a large multidisciplinary mental health clinic outside Detroit, and I serve as the chief medical officer of the Clinical Trials Groups of Southeastern Michigan. In 1985, all my classmates and I were setting out on a long journey, and although we started in the same lecture halls with the same professors, from there our paths diverged. Over time, each found their passion and calling—the development of this book has been my gravitational pull.

Psychiatry is a most fascinating career path; most encounters with patients are intense, and every 30 minutes or so, I can find myself in uncharted territory. During the course of my career, the specialty has also become more powerful—and thanks to innovations in diagnostics and therapeutics, much more can be done for the good of our patients. Although it is true that full cures are elusive, it is rare that contemporary psychiatry is unable to improve the quality of a patient’s life.

Individuals with chronic fatigue syndrome (CFS) have proven to be exceptions to this rule. Early in my training, I was drawn to patients who did not quite fit in; and indeed, CFS patients had few places to turn. Their triad of symptoms—persistent fatigue, unexplainable pain, and impaired thinking—are familiar to most primary care doctors, but unfortunately, the medical community has been unable to chart a path forward for those who suffer. Unlike other medical problems, no medical specialty “owns” CFS. A patient with eczema goes to the allergist; a patient with Parkinson’s disease sees a neurologist; and if you develop heart disease, you will find care and comfort in a cardiologist’s office. In contrast, very few physicians have raised their hands to welcome CFS patients to their practices. Neither did I in the early part of my career, when I knew little about the condition; I proclaimed it not part of my specialty and left the treatment of CFS patients to someone else.

At the beginning of my career, my professional interests lay elsewhere, and I became intrigued by the burgeoning field of attention-deficit hyperactivity disorder (ADHD). I started to care for many adults with ADHD and became deeply familiar with the core treatment for ADHD: long-acting stimulant medications. During this time, I had the revelation that many ADHD patients also complained of persistent fatigue, vague but elusive body pain, and a lack of mental sharpness that we call “brain fog.” Quite by chance, I noticed that after treatment with long-acting stimulants, some of these patients reported significant improvement in classic CFS symptoms, such as fatigue and body pain. After several years, I set out to perform a clinical trial comparing lisdexamfetamine (LDX, currently sold under the brand name of Vyvanse) to placebo in subjects with CFS. The results of my double-blind, placebo-controlled study were positive and confirmed my clinical observations. I presented the findings at a national conference and published a formal paper in a peer-reviewed professional journal. The paper drew some interest, but as is my way, I did not shout out my findings from tall buildings to draw in other professionals. I had other tasks to tend to, and I moved on to the next task.

But I did not really move on. In my clinic, I continued to see CFS patients and to spend time learning about their experiences. I became more convinced that CFS is a readily diagnosed syndrome that responds well to available treatments, and I realized I had to amplify my findings beyond readers of scientific papers. CFS wreaks havoc with all in its path; every moment of an individual’s life is affected, and they often bear the burden without their family’s support or their physician’s understanding. CFS has an economic impact as well; the condition negatively affects one’s ability to fully produce, and employers lose sympathy with underperforming workers. Insurance companies are reticent to pay disability benefits to clients with a poorly defined disease characterized by invisible symptoms. I am certain that there are many interested parties eager to learn about a viable treatment for CFS and related conditions.

This book is part of a project that has several goals. I am committed to connecting to patients with CFS and related disorders and offering them information about their illness and potential treatment options. I also want to reach out to doctors who work in this field to elaborate a method of approach for this vulnerable population. Finally, I would like to spur a pharmaceutical company that owns the rights to an appropriate medication to scale up a larger, multicenter study to test a thesis proposed in this book: that stimulants often can improve the symptoms of CFS. The CFS community needs and deserves this type of support. Unless I meet these goals, my objectives will not have been fully reached.

All lofty projects need to be grounded in reality. I write this book with the knowledge that I am discussing a class of medications for an indication not approved by the Food and Drug Administration (FDA). I do so in the spirit of sharing an idea and provoking interest. I am most respectful of the need for rigorous scrutiny by others. Note that off-label prescribing is lawful and done frequently by physicians. Doctors can prescribe any approved drug for an indication not covered by the FDA. Of course, physicians should inform patients about both the benefits and the risks of off-label prescribing.

I have divided this book into three major parts. In Part 1, I provide chapters on CFS and explain how this medical problem is differentiated from other conditions, both physical and psychological. I also discuss the theories on the causes of this insidious, life-changing syndrome. In Part 2, I provide a chapter on the Rochester Center’s study on CFS, comparing the stimulant LDX to placebo. The following chapter summarizes the various stimulants and “wakefulness” medications that are available today as potential options for clinical application and research exploration. In the last part of the book, I provide a discussion on some of the most troubling symptoms of CFS, including a chapter on how to cope with the overwhelming feelings of fatigue, a separate chapter on how to manage chronic pain, and another chapter exploring the “brain fog” that so many CFS patients encounter. The book concludes with an frank discussion of sleep issues. In my appendixes, I list frequently asked questions (FAQs) as they relate to CFS, a glossary of terms, and screening measures that help physicians assess a patient’s issues.

Understanding and Treating Chronic Fatigue: A Practical Guide for Patients, Families, and Practitioners can be read as a whole or as a handy reference. I trust that this guide will help readers better understand this mysterious illness and help them overcome their symptoms with the information I offer.