Book Review of Official Patient’s Sourcebook on Diabetes Insipidus, 
suggesting that a fair amount of what one reads in
"official" medical books may be less than  reliable.

The 2002 Official Patient’s Sourcebook on Diabetes Insipidus, edited by James N. Parker, M.D. and Philip M. Parker, Ph.D.  ICON Health Publications, San Diego, CA 92122 or on-line at: www.icongrouponline.com/health
Review originally published in Endless Water, the newsletter of the Diabetes Insispidus Foundation, Autumn, 2004.

This book truly reveals the full extent of knowledge and research about DI, though not in the way its publishers intended. Even though it contains some useful information, it is nonetheless a poorly edited amateur piece of work that has not been so much written as compiled.  Though termed a "Patient's Sourcebook," it is doubtful if its contents were ever tested on a single DI patient (or a single endocrinologist specializing in DI) before being published.  It might be supposed that this book's many shortcomings stem from how little is known about DI, but as we shall see this is by no means the full explanation. The volume revolves around some 250 web addresses plus some 30 recommended books, all of them supposedly dealing with DI.  Of the 250 web sites, about 100 contain no information at all about DI, 51 repeatedly present the usual facts about this condition (often culled from such sites as the DIF and NDIF), 57 are simply bad links leading nowhere, and as many as 20 actually turn out not to deal with DI at all but with Diabetes Mellitus.

 
Such confusion between DI and DM is common among the general public and even many health-care workers, but one does not expect to find it blatantly displayed in a professional publication about our condition.  As for the "books" listed as actually dealing with DI, the most recent one is twenty years old, while several others date back even further to the 'Twenties and 'Thirties, and one actually first came out in 1903. Such sources  would be far more useful for writing a history of DI literature than for learning how the condition is treated today. And even in this supposedly DI-specific section, three of the recommended books are devoted solely to  Diabetes Mellitus (including "The Bible Cure for Diabetes"). 

 
This book is available in both electronic and hard-copy editions.  Its first two chapters cover basic information about DI and where to go to seek help. Five of the next six chapters list websites alleged to help DI patients enroll for clinical trials or to find books, studies, dissertations, and multimedia presentations about DI.  Chapter 7 is entitled "Physician Guidelines and Databases" and presents links from that area (at least those that work).  Five separate appendices deal with DI medications, alternative medicine, nutrition, finding medical libraries, and finally patients' rights and insurance matters.

 
Such a framework alone ought to ensure complete and thorough treatment of this condition, but the writing and overall presentation frequently become lost in a sea of combined medical and legal boilerplate.  The reason for this is not hard to determine, as the whole book feels as though it had been written to fulfill the conditions of an externally imposed template, whether that template happens to fit DI or not. 

 
And indeed the book has been written in precisely this way, as one can easily determine by logging onto the publisher's website at: www.icongrouponline.com/health.  Here one discovers that "The Official 2002 Patient's Sourcebook on DI" is simply one volume out of not merely a hundred--no, not even one out of a thousand—but one out of over 6,400 "books" on almost as many diseases, four-fifths of them also entitled "Official Patient's Sourcebooks" and employing much the same structure and chapter headings as this one about DI.  In other words, large sections of this book, including not only most of the Appendices but also the chapters on seeking guidance, clinical trials, physician guidelines, and many other portions are likely to be close to identical in these thousands of other "volumes."  And many of the diseases and complaints covered in these myriad works actually make DI sound like a well-known condition by comparison, which suggests that at least some of this publisher's other "sourcebooks" might well turn out to suffer from similar problems.

 
This means that if this book about DI is any indication, the actual work of "writing" all those other volumes may have quite possibly been little more than a hit-or-miss process of "filling in the blanks."  Anyone familiar with writing and editing will swiftly realize that the editorial demands for researching, writing, and fact-checking over 5,000 books (allowing for diseases with more than one name) are almost impossible to meet. This is why I cannot help wondering about the quality of the other books, since so little has been done to meet these demands in the current volume.  What one encounters definitely has the look and feel of a committee-assembled product, perhaps cobbled together by overworked med students desperate to make some money on the side.  Each of these volumes is priced, as is our own, at $28.95, except for those called "A Bibliography, Medical Dictionary, and Annotated Research Guide to Internet Resources," which usually fetch $48.95.

 
The publishers also boast on their website that all their 5,000 titles are being distributed by Amazon and Barnes and Noble.  This means there is a fair chance that anyone anywhere in the world who enters the name of any of these 5,000 conditions in a search engine plus the phrase "patient information" or "patient's outlook" (or any description containing the word "patient") will come up with the title of the ICON Group's book on the subject among the very first listings.  This is certainly true for Acantholysis Bullosa, Gnathostomiasis, and Rift Valley Fever, to give three random examples.  And it is also true for DI.

 
Which in turn means another thirty-dollar payment for the publishers and possibly just as much confusion for the patient as I am describing here.  Most readers will assume that they themselves are at fault when they are unable to cope with the medical jargon used on some of the links that actually work.  To "solve" the terminology problem, the editors have ended each of the book's chapters ends with a "Vocabulary Builder," based on their claim that "building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process."  But no more than 200 terms are defined in these sections, as opposed to 2,000 pages chock full of such terms to be found in some medical dictionaries.  A student who has learned 200 words of Italian and then tries to tackle Dante (or even an Italian newspaper) will have a similar problem.  But some readers will give up even sooner when they are unable to get through to numerous websites and falsely assume it must be because they are computer illiterates.

 
In some ways this book doesn't help readers at all but actually wastes their time.  For instance, its section on "Researching Your Medications" simply presents the names of the following products and advises readers to go to a fair number of commercial websites for each one of them:  Amphotericin B, Sulfonylurea, Carbamazepine, Clofibrate, Desmopressin, Thiazide, Headache Medicines, Ergot Derivative-Containing products, Lithium, Lypressin, Vasopressin, Chlorpropamide, Chlorthalidone, Ethacrynic Acid, Ethacrynic Acid (Ethacrynate), Hydrochlorothiazide(HCTZ), Indapamide, Levothyroxine Sodium, Liothyronine Sodium, and Metolazone.

 
But of all these preparations, only a few, namely Vasopressin and Desmopressin, are normally prescribed for CDI, and only some of the thiazide and diuretic products mentioned are used to treat NDI.  Writing in a recent Endless Water, Drs. Robert Izquierdo and Arnold Moses specifically stated that they did not recommend the use of chlorpropamide, clofibrate, or carbamazepine for CDI patients.  Lithium can actually induce NDI, Sulfonylurea is used to treat not DI at all but Diabetes Mellitus, and Lypressin is no longer on the market except as an orphan drug. An entire article could be written about the mistakes in the list of products.

 
In its overall hit-or-miss approach the book naturally also manages to include some truly helpful links, which I am providing here, though they may be most useful for readers with some medical background.  For instance, anyone with the time or patience can examine the titles and often abstracts as well for 6,741 specialized monographs & papers on DI and related topics dating back to 1950 by entering the word "insipidus" in the search command on the PubMed site at:

                             http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=Pager&DB=PubMed

A more accessible listing of some 243 sources can be found on the National Library of Medicine's website at:

http://search.nlm.nih.gov/homepage/query?FUNCTION=search&PARAMETER=insipidus&DISAMBIGUATION=true&START=0&END=25&MAX=250&ASPECT=0

though its later listings wander increasingly off the subject.

The National Institute of Health has a similar list of 197 sources at:

http://www.nih.gov/google/google.search.nih.html

Current DNA-related research into our condition can be folllowed by those with sufficient technical background on the Gene Expression Omnibus (GEO) site at:

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?CMD=search&DB=geo

And anyone interested in finding the US medical library closest to them can do so by clicking on a map at:

http://www.nlm.nih.gov/medlineplus/libraries.html

Readers attempting to follow this research path should in most cases enter only the word "insipidus" in using these sites: otherwise they will be swamped by entries about Diabetes Mellitus.

The basic instincts of this work's editors and publishers are not entirely mistaken.  Early in the book they write:

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies.

And again:

All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information...our goal is to give you access to original research and to increase your awareness of sources you may not have already considered.

But they have not succeeded in reaching either goal.  If anything, they have merely added to the burdens borne by doctors in dispelling misinformation.  And I believe they have also greatly added to the burdens of patients who wish to find and organize information about their condition.

 
As should be more than clear by now, this book presents relatively little  real information about DI at all, it merely presents a list of web sites and other sources where patients must go to find out this information.  In pursuing this approach, the editors have proceeded on the basis of two demonstrably false premises, both illustrated by two descriptive terms they use in their thousands of titles: "official" and "patient's sourcebook."

 
They justify calling their books "official" publications because

this reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research.  Selected readings from various agencies are reproduced to give you some of the latest official information available to date on diabetes insipidus.

But this explanation does not make the current work or any of its five thousand co-products "official" in the slightest, all it truly means is that the information has been drawn from government, professional, and commercial websites.  They call it a "sourcebook" to disguise the fact that readers will find very little real information in its pages, only a combination of real and faulty links leading to such information. These two fairly disingenuous claims come close to skirting the boundaries of scam, and the book as a whole comes close to being a scandal.  I cannot of course offer an informed opinion about the contents of the other thousands of books in the series, but I also cannot help fearing the worst.

 
In some ways this book (and perhaps this entire series of books) may be a typical product of at least one side of the current medical mindset.  Doctors want you to believe that they have  some useful information about your condition, but they are also afraid to tell you that information for fear they may not know enough about your specific case and could turn out to be mistaken (which might lead to a lawsuit).  They also want you to pay through the nose for the privilege of consulting them.

 
Final conclusion: patients who need to learn about our condition would do well to avoid this book and simply consult the free DIF site and its many links. If you do decide to order this work in its e-book form, make sure you specify that the copy command must be enabled, in case you want to make notes or excerpt occasional passages: otherwise you will receive a read-only copy.  It would appear that the publ;ishers are more concerned about copyright than in helping patients with their problems.

——Alexander Gross, Dipl. Ac.