Start with extreme exhaustion that doesn’t get better, even with a lot of rest. Add in muscle and joint pain, memory problems, headaches, sleep problems, sore throat and tender lymph nodes. People with Chronic Fatigue Syndrome (CFS) suffer from a complex and pervasive illness that can cause some or all of these symptoms.
Poorly understood by scientists and sufferers alike, CFS affects the brain and multiple body systems. According to the Centers for Disease Control, more than 1 million Americans have the disease. The cause of CFS, also called myalgic encephalomyelitis (ME) and chronic fatigue and immune dysfunction syndrome, remains a mystery. And without understanding a cause, it is nearly impossible to definitively diagnose or effectively treat.
Chronic Epstein Barr virus infection, Lyme disease, total allergy syndrome, multiple chemical sensitivity syndrome and bodywide yeast infection have been implicated as causative agents in the past, but research has not borne out those hypotheses. Research focusing on other infectious agents is promising but incomplete.
Researchers at Stanford University are among those looking for answers and finding some solutions.
Jose Montoya, M.D., associate professor of medicine, infectious diseases, is scheduled to provide information on recent research regarding diagnosis and treatment and the possible CFS-infection connection, 7 p.m. March 3 at the Arrillaga Alumni Center on the Stanford campus. Sponsored by Stanford Health Library, the talk is free and open to the public. Call 498-7826 to register.
Living with CFS can be frustrating. Most people, including health-care providers, do not know much about CFS, and treatment options are limited. There are those who believe it is an “imaginary disease,” “all in the head of the patient.” Those suffering from CFS and many of their doctors know that it is absolutely real.
Victims of CFS often perceive themselves as alone and misunderstood. Sometimes a good book, full of useful information, can serve as a supportive friend. There are several books at Stanford Health Library that fill the bill.
From Oxford University Press’ well-regarded “The Facts” series is the book “Chronic Fatigue Syndrome (CFS/ME)” (2nd ed., 2008). Authors Frankie Campling and Michael Sharpe provide a roadmap to scientific information about the disease, while acknowledging the importance of patients’ roles in defining and managing their illness. The book provides research-based information to help patients and caregivers make informed decisions about treatment and offers practical guidance on how patients can help.
Perhaps the most valuable aspect of the book is its effort to encourage readers to understand and consider the level of evidence presented. CFS is a disease that attracts many charlatans who present false hope to patients without any scientific evidence to support their claims. An appendix provides an excellent instrument, called DISCERN, designed to evaluate medical evidence for all diagnoses. This is a must-read for anyone with CFS and those who love them.
Elizabeth Turp’s “Chronic Fatigue Syndrome/ME: Support for Family and Friends” (Jessica Kingsley, 2011) was written to promote understanding of the emotional, social and day-to-day impact of CFS. Both patients and their loved ones will find this book full of valuable tips for providing supportive care in an often confusing and complicated situation.
CFS is characterized as mild, moderate and severe, and help for physical, cognitive and emotional symptoms is recommended based on the degree of illness. Beyond understanding the disease and its ramifications, Turp offers practical advice on issues including personal hygiene, nutrition, domestic tasks, travel and employment. The book closes with “Top Ten Tips” on how those who care can help.
CFS is often considered synonymous with fibromyalgia. Although the two diseases can coexist, they are separate entities. “Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection” (Healing Arts Press, 2010) explains the differences and similarities of the three conditions.
Authors Celeste Cooper, R.N., and Jeffrey Miller, Ph.D., focus on therapeutic options that address physical, cognitive and emotional issues. Solutions presented vary. This is an excellent, positive book for those with CFS, fibromyalgia and/or myofascial pain. Readers can come away with a better understanding of their condition and a host of coping tools.