Dr. Bell and parents share their experience
A Parent's Guide to CFIDS
David S. Bell, MD, Mary Z. Robinson, Jean Pollard, Tom Robinson, Bonnie Floyd
1999, Haworth Medical Press, $17.95
(Available from the Association)

If you have a child with CFIDS, this book will be an invaluable guide as you help your child deal with the frustration and loneliness that typically accompanies this illness and as you advocate for and support your child in school.

This book is not about treating CFIDS. Except for a brief introduction to the illness and an even briefer discussion about establishing a good relationship with your child's doctor, the book's focus is on a child's educational and social development. While CFIDS leaves parents and patients feeling a loss of control over their lives, the advice here will help you take control where you can. The authors' approach will assure you that you are not alone and that you can make a difference in your child's life.

Questions about dealing with friends and setting activity limits are addressed, with an especially strong chapter that helps parents understand the feelings that a young person with CFIDS experiences. There is a concise and clear explanation of the various laws that govern your child's educational options, and practical advice for working with school personnel on a day-to-day and year-to-year basis. The book is relatively brief-160 pages-and you may find you want or need more information. The appendices here will get you started, with lists of support organizations, web sites and education resources. The book also includes a sample letter from a doctor to a school and examples of individual education plans.

The authors bring a great deal of personal and professional experience to this book. Dr. Bell is a family doctor in Lyndonville, N.Y., who began researching CFIDS when a number of his patients became mysteriously ill in 1985. He has written two previous books about CFIDS, The Disease of a Thousand Names and the essential text, The Doctor's Guide to Chronic Fatigue Syndrome, both available from the Association. Jean Pollard is Dr. Bell's office manager and research assistant, and her four children were his first CFIDS patients. Mary and Tom Robinson have two children with CFIDS and lead a support group for CFIDS youth and their families. Mary has a master's degree in education, while Tom is a school counselor. Bonnie Floyd is a doctoral student in psychology who has previously studied CFIDS.

Dr. Shepherd updates his comprehensive M.E. book
Living with M.E.
Dr. Charles Shepherd
1999, Vermillion, $17.95
(Available from the Association)

As medical director to the M.E. Association and as a sufferer of myalgic encephalomyelitis for more than 20 years, Dr. Shepherd has learned a great deal about M.E. He packs the nearly 500 pages of this book with details of what doctors know about the illness, what they're learning through current research, recommendations for treatment, and all manner of advice for managing the difficulties of daily life in the face of M.E.

Readers will especially appreciate Dr. Shepherd's candid assessments of various treatments, especially of the alternative and complementary treatments that are often used to treat M.E. Even if one disagrees-and certainly many will, as Dr. Shepherd takes a cautious and mainstream medical approach-patients should find his thorough explanations of his opinions valuable in making their own judgements or in discussing treatment options with their doctors. For example, he goes into great detail in building an argument that claims of candida overgrowth as a factor in M.E. are not backed up by sound science. Efforts to control this alleged yeast overgrowth are a blind alley, he says, draining funds that could be better spent on more appropriate treatments and introducing unnecessary drugs and dietary restrictions into an already sick body.

In recommending the book in a Capita Selecta review, Dr. Ellen Goudsmit wrote: "The book is conservative when it comes to complementary medicine, but it's not unfair. In a nutshell, it's sympathetic, balanced and reliable. It informs but does not irritate. Quite simply, essential reading for anyone wishing to know the facts and understand the latest research."

While many of the references to support groups, social services, government agencies, laws and disability benefits are specific to England, the vast majority of the information presented here is universal-notably the 544 references to peer-reviewed journal articles on research and treatment issues. The bulk of the book is devoted to a thorough exploration of the latest research, possible causes, symptoms, diagnosis and treatment-as available by self-help as well as from mainstream and alternative medicine. One chapter focuses on "mind and body," explaining the emotional component of M.E. and how it is viewed by psychiatrists, and helping readers assess whether antidepressive drugs or psychologically based treatments might be appropriate for them. Another group of chapters addresses such topics as relationships, children, pregnancy, jobs and mobility.   

And Dr. Shepherd makes no distinction between CFIDS and M.E. except in the introductory discussion of the various names of the illness and its history. Throughout the book, he uses the term M.E./CFS, but he explains that even that compromise is not satisfactory, given the various definitions and the history attached to both M.E. and CFS.

Using yoga to build energy
Beat Fatigue with Yoga
Fiona Agombar
1999, Element Books, $10.95
160 pages (Available through bookstores)

Fiona Agombar is a trustee of Action for M.E. in England and has been assistant editor of its magazine, Interaction. She credits yoga with helping in her recovery, but this book is neither her story nor a guide to M.E. or CFIDS. Rather, it is a guide to beginning yoga for the purpose of overcoming fatigue of any degree. She explains the philosophy of yoga as a means to control the mind and balance one's physical, mental and spiritual states. Before introducing and exploring various yoga postures, Agombar emphasizes breathing exercises. In recognizing the severity of M.E./CFIDS and the controversy over exercise, she notes that yoga can be particularly helpful to persons with this illness because it is not competitive and one can proceed at one's own pace. She writes: "The first step is learning to listen to your body so that you can take note of how you feel and pace yourself properly.. You may start just with breathing, stretching and meditation."

She suggests adding a posture a month and advises against joining an ordinary yoga class until one has made considerable progress in one's recovery.
 
On the road with M.E.
Jailbreak: A Slow Journey Round Eastern Europe
By Gill Suttle
1998, Scimitar Press, 182 pages (Available by mail order. From outside the U.K., payment by international money order or bank draft, 6.49 by surface mail, 8.24 by airmail. Scimitar Press, P.O. Box 41, Monmouth, Gwent, NP5 3UH)

A driving tour of Eastern Europe sounds like a rather bold undertaking for anyone, but consider doing it solo, with the limited energy of a person who has been disabled with M.E. Such is the adventure Gill Suttle undertook as she began to spend less time in bed and, stricken with wanderlust, sought to push her horizons.

From her home in Ross-on-Wye, England, this former athlete fitted a tiny minivan with a mattress, food and an itinerary that would take her across Germany, through Austria and Hungary, north through Poland and the Balkans. This book is essentially her diary of the trip, casually mixing vivid descriptions of countryside and encounters with local people with the difficulties of traveling as a person with a limiting illness. The writing is conversational and the perspective personal as the reader experiences Suttle's surprises and disappointments and the unexpected twists and turns of the trip.

Self-help for fibromyalgia
Fibromyalgia Relief Book
Miryam Ehrlich Williamson
1998, Walker and Co., $14.95
(Available through bookstores)

This book is subtitled "213 ideas for improving your quality of life." It's a self-help book rather than a treatment book, focusing on strategies the patient can employ to accommodate life to the limitations of the illness and to get the most out of life in spite of the illness.

Miryam Williamson reports that she was barely functioning in 1993 when she was diagnosed, but today she is active and contributing as a counselor, award-winning author (Fibromyalgia: A Comprehensive Approach, 1996) and technical journalist. The change is the result of "a lot of learning and a lot of thinking [to figure out] how to get back most of those parts of my life that I value highly." That is what she shares in this book.

She covers household activities, hobbies and holidays, accommodations at work, travel, improving sleep, sustaining relationships, easing stress, nutrition, exercise and personal and group advocacy. The chapter on household chores is packed with practical suggestions and tips for easing the workload. She stresses the importance of taking time for relaxing and rewarding activities such as gardening, for intimacy with one's partner and for visiting friends, and she offers practical suggestions for making those things possible.  

For all the discussion of symptoms and coping strategies in this book, one could easily substitute "chronic fatigue syndrome" for "fibromyalgia" and not miss a beat (with the possible exception for some CFIDS patients of the discussions of exercise and work). However, it's curious to note that there are only two brief references in the text to chronic fatigue syndrome-a note that cognitive behavior therapy has also been studied with chronic fatigue syndrome and a complaint that federal spending on fibromyalgia is far less than for chronic fatigue syndrome even though far more people have fibromyalgia. The extensive "resources" chapter lists books, publications, organizations, websites and catalogs for a wide variety of illnesses, from tinnitis to back pain to interstitial cystitis, but the only resource for chronic fatigue syndrome is one Internet discussion group.

CFIDS is conspicuously absent. The omission is particularly notable, since many thousands of people have been given diagnoses of both CFIDS and fibromyalgia, many prominent doctors believe the two illnesses are at the very least closely related, and a number of leading researchers in the field are designing studies to see if, in fact, the illnesses can be differentiated at all.

Healing through prayer
Can God Help M.E.?
Elizabeth Babbs
1999, Eagle, 192 pages (Available from the publisher, by E-mail at eagle_indeprint@compuserve.com)

For many people who suffer with chronic illness, spiritual strength takes over where medical science and practical coping end. Elizabeth Babbs is among those who believe God can and does heal people. A dancer and teacher, she was disabled by M.E. and later fully healed upon turning to God. The writing of this book, leading M.E. retreats and workshops, and reaching out to those who suffer from the illness are now her mission. Her book is loosely organized in two parts-the first half a discussion of the illness, support and family issues, self-help, coping with loss, and the value of counseling, respite care and retreats, and the second half about the healing power of God and prayer. From her perspective as a layperson, she explores questions such as why some are healed physically and not others, and what it means to become open to God.

Throughout the book, Babbs does not dwell on her own story but uses the voices of others with M.E., through writing, poetry and testimonies. She writes: "Being miraculously healed of M.E. does not make me an expert on healing. Many sufferers have wanted to know my 'secret' so that they can follow it and become healed. But the only formula that never changes is God, and the greatest healing has to be in our relationship with him."

Dazed and fatigued
Dazed and Fatigued in the Toxic 21st Century
Mark Llewellyn Hall
1998, Consafos Press, $12.95
(Available through bookstores)