May - June 1999
New books focus
and children with CFIDS
Dr. Bell and parents share
A Parent's Guide to CFIDS
David S. Bell, MD, Mary
Jean Pollard, Tom Robinson, Bonnie Floyd
1999, Haworth Medical Press, $17.95
(Available from the
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
Living with M.E.
Dr. Charles Shepherd
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."
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 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
1999, Element Books, $10.95
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.
the road with M.E.
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
and Co., $14.95
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.
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.
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.?
1999, Eagle, 192 pages (Available
from the publisher,
by E-mail at firstname.lastname@example.org)
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
(Available through bookstores)
Mark Hall interweaves his personal
stories of overcoming CFIDS and
maturing from Gen-X college student to adulthood. However, CFIDS is more a backdrop than the focus of
this memoir. It's mostly about friends and relationships made and lost along the way, finding peace and
meaning in a confusing world and coming to grips with the demands of real life, all while struggling with
the limitations and frustrations imposed by illness. The Washington Post noted that while the
book "does not offer quirky metaphors or literary prose, it's plain-spoken immediacy throws light on a
common illness seldom taken seriously in this highly competitive era." Hall, a graduate of the University
of California at Berkeley, lives in New York. He was sick for six years and considers himself recovered.