Faces of CFS

by David S Bell MD

free download [PDF electronic version]

The name of Dr David Bell will be familiar to many. He is a GP who in his practice has taken a special interest in ME/CFS - and especially children with CFS, for his specialty is paediatrics. He is one of that small but important group of doctors who, as he says himself:

are willing to see CFS patients from day to day, who understand CFS is not a trivial disease, [and] try to find ways to relieve their patients' symptoms, just as doctors are taught to do in training.

This small book is the distillation of Dr Bell's years of experience caring for, observing and studying people with ME/CFS with the help of his wife Karen and their colleague Mary Robertson.

In the first chapter, he describes how he and his wife first got involved with the treatment of ME/CFS. As young doctors who had recently set up practice in rural New York State, they found themselves dealing in 1985 with an outbreak of a mysterious "flu" among their patients. Eventually, over 200 people were affected in Lyndonville and the surrounding region. Some got better, others became chronic sufferers. 20% are still ill to this day, and some remain bedridden.

Each chapter in the rest of the book is an individual patient's story, illustrating some aspect of the illness and discussing what the underlying disease process might be. Dr Bell explains:

Frequently, my patients have inadvertently offered insights into the meaning or importance of a specific symptom, providing a defining principle that seemed to apply to all patients with this illness. … What follows is my attempt to tell the stories my patients have told to me, the stories that provided my understanding of CFS, the principles that define the illness.

He documents his efforts to help his patients by listening to what they have to tell him about their illness and following up on the clues they provide. He discusses the implications of various symptoms such as orthostatic intolerance, low blood volume, and the neurological deficits that seem to be the hallmark of the illness. As he tells their stories, he also describes the personal responses of different patients to their predicament. It's a fascinating book and also a moving one.

What comes over very strongly is his compassion and respect for his patients. And unlike so many "CFS experts", he believes what his patients tell him:

The descriptions of the disease given me by my patients - people who are able to articulate with some precision exactly what they are experiencing - has solidified my belief in the reality of what the government calls chronic fatigue syndrome. These consistent descriptions have come from people with no reason to fabricate a complex illness.

David Bell is very critical of the attitude of the medical establishment to ME/CFS, and the government's failure to take the illness seriously. He describes how, in the early stages of the outbreak, as more and more people got sick with the mystery flu, he and his wife Karen alerted the federal government infectious disease experts, as they were required to do. But noone seemed to take an interest in what was happening:

Scientific investigators from the Centers for Disease Control chose not to come to Lyndonville … Instead, they left the outbreak in the hands of the state health department, but the state failed to investigate, as well. My wife and I got the powerful sense that both state and federal health officials thought our outbreak of disease in Lyndonville was all hooey.

They were left to do what they could for their patients. He admits to being disillusioned and frustrated:

There has been some scientific progress, of course, but it has not yet resulted in effective or curative treatments to my patients in Lyndonville. Perhaps treatments will soon come from the studies showing abnormal immune function, hormone function, or decreased brain blood flow. But the scientific progress is slow. And clinicians who see patients every day are impatient.

Meanwhile the psychiatrists peddle notions of "somatisation" and "neurasthenia" that make no sense in terms of sufferers' real lives. Watching their patients' daily struggle, year after year, doctors like David Bell get to know ME/CFS in a way that these "experts" never do. In Faces of CFS readers should find much they can identify with, and information that may be relevant to their condition. I am sure people will also find the book comforting and validating.

Moira Smith

Review first published in ChaMEleon, Journal of the ACT ME/CFS Society, Summer 2002-3

How to get hold of the book

The price is $US 25, which is about $Aus 44.40 at current exchange rates (Dec 2002). This self-published book can be ordered direct from Dr Bell at PO Box 335 Lyndonville, NY 14098; but with the complication of allowing for currency conversion and international postage, I found it simpler to buy it online from Amazon.com.

or Download a free electronic copy [PDF] from http://www.davidsbell.com/DSBFaces.htm

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