The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 16 November 2015 16 November 2015
by Rick Laferriere
(Permission to repost was granted by Rick Laferriere, co-moderator of the LymeInfo yahoo group for Rhode Island. Additional information about this group is included at the end of this review.)
Pamela Weintraub, Cure Unknown: Inside the Lyme Disease Epidemic (New York, NY: St. Martin’s Press, 2008), 432 pp. ISBN: 0312378122.
When I received my copy of Pamela Weintraub’s new book, Cure Unknown: Inside the Lyme Disease Epidemic, I was eager to read it and found it difficult to put down. However, it was more than my own personal experience with tick-borne illness that piqued my interest.
I longed to read how Pamela Weintraub, a competent science journalist who had deeply personal experiences with Lyme disease, would tell the complex story of Lyme disease. To me, this story is one that has been crying to be told and Pamela Weintraub is perfectly poised to tell it.
At first, I was reminded of Polly Murray and her superb 1996 book about the early years of Lyme disease, The Widening Circle: A Lyme Disease Pioneer Tells Her Story (St. Martin’s Press). Weintraub picks up the trail with stories of herself and other mothers who are struggling to find explanations for the unusual medical problems in their families that baffled every doctor they met. Today, we know much more about the pathogens transmitted by the bite of a tiny deer tick than we did over thirty years ago. Sadly, we are still reading about mothers in dogged pursuit of the same answers.
The horrific treatment by medical professionals toward sick children described in Cure Unknown is cruel, incomprehensible and devastating. The indiscriminate determination of who actually has Lyme disease and who doesn’t is just one example.
A patient in Weintraub's book goes to several doctors who repeatedly determine that he definitely does not have Lyme disease. A few years later a test shows him to be unequivocally positive. Nevertheless, when the patient fails to improve after a few months of antibiotic treatment, he is deemed to no longer have Lyme disease, is refused further treatment and is told his problem must be psychiatric.
Real doctors behave this way and they do not need a rational explanation to justify their actions. This is Lyme disease and if you ever thought it was the “disease du jour” you are in for a rude awakening.
What sets Cure Unknown apart, and makes it so compelling to read, is how patient histories are told in the context of an unfolding and fractious divide within the medical and scientific research communities. Readers will learn about patients who are largely ignored by the mainstream medical community with a disdain, derision and passion rarely seen with other illnesses.
Weintraub’s deft use of wry humor allowed for such distasteful behavior to be a bit easier to swallow. Her exhaustive research, interviews, and knack for explaining complex scientific information combined to keep me engaged and eager to finish the book. Seasoned veterans of Lyme battles of their own will also find bits and pieces here that they will learn about for the first time.
I had to wonder, in the end, how many Lyme patients experience the same tragic challenges as those profiled in this book. We may never know the answer. That’s because there is still no gold-standard test to distinguish patients with Lyme disease from those without Lyme disease. This kind of research, oddly, has not entirely been the focus of the research community since Lyme was first discovered over thirty years ago and Weintraub illuminates this conundrum quite well.
Her book should alter the landscape upon which the tiny deer tick thrives and the Lyme patient wanders in a solitary search for answers.
Editor’s note: Rick Laferriere has been a long-standing advocate for Lyme Disease. Rick serves as co-moderator of a yahoo group, LymeInfo, with the same name as the main organization. This yahoo group is an email list that was created to supplement the main website LymeInfo.Net, and it has served the online Lyme disease community since 1997. He describes this yahoo group as a one-way dissemination of periodic announcements of the latest news coverage on Lyme Disease, including scientific items, upcoming events and important action items, but without the conversation found on email support and discussion lists.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.