A Parent’s Guide to CFIDS

By David S. Bell, MD, Mary Z. Robinson, Jean Pollard, Tom Robinson, Bonnie Floyd

1999, Haworth Medical Press

Review by David M. Hoh

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.