.
The Icon Health Publication Group publishes a number (24) of guides on very rare diseases (like IBM and CIDP) and also on some exceedingly rare diseases (for example, Stiff person [man] syndrome). So, as a person with IBM, I was anxious to read a book devoted to the topic. The book was a disappointment. Unfortunately, the book is not really about IBM. More unfortunate, the material presented on IBM isn't very good.
The book is presented as a sourcebook for patients and to a large degree it is - patients in general, not patients with IBM. It also says it is a revised and updated directory for the internet age. A book about internet sites is almost an oxymoron - in the rapidly changing landscape of medical research and the internet how current is it? Not very as we will see.
Most of the book presents very generic information obtained from the internet and adapted by the editors (I can see why they don't call themselves authors - it appears that they did not write much of the material themselves). Sadly, the phrase inclusion body myositis is simply inserted where appropriate - where the name of any disease could just as easily be substituted. I imagine that the other books in the series simply reprint a great deal of this basic information on internet health care and disease resources.
The book has a jumpy and pasted together feeling - like the editors just put material in to fill up space.
Some illustrations are in order. First we are presented a description of IBM "adapted from the National Institute of Neurological Disorders and Stroke" (an excellent organization to be sure). We are told that IBM is "very similar" to polymyositis. In fact, the two diseases share initial symptoms that are very similar (thus IBM is often misdiagnosed as polymyositis), but the two diseases are in fact very different beasts.
On page 11 we are told in four sentences that there is no standard course of treatment for IBM. No specific treatments are mentioned.
We are presented with the web addresses of a number of organizations offering pamphlets and brochures on IBM. Page 15 presents us with the results of an internet search the editors did producing a "recent" posting dated 1999 (this book is dated 2002).
A running glossary is presented at the end of each chapter and to ensure a few more pages, the items are presented a second time at the end of the book. Many important terms are missed, for example, autoimmune is used in a definition from the Myositis Association of America (now The Myositis Association) on page 15 without any explanation or background. We are directed to webpages that offer criteria for the myopathies but no diagnostic criteria are offered directly.
Support groups are mentioned but again the references are mostly generic. Specific IBM support groups are largely ignored, for example, the excellent http://www.myositissupportgroup.org/IBM/ Information is presented on how to find a Doctor and how to find a neurologist but the reader is left in the lurch as to whom, if anyone specializes in IBM. A list of 5 or 10 of the clinics across North America with an interest or specialty in IBM would have been appreciated.
A strength of the web is that a search will produce thousands of hits on even an obscure topic. Readers (in this case, the editors) must be careful consumers to judge what is relevant, credible and useful to include. For example, I don't know how useful it is to include a 1918 publication on myositis ossificans progressiva under the section books on IBM. To their credit, they do reference the only book ever published on the clinical aspects of IBM, the volume by Askanas et al (1998). But, I did not see "Coping with a Myositis Disease" by James Kilpatrick, a collection of patient's personal stories (2000).
Chapter 6 is more cut and paste, again of questionable relevance. Under multimedia on IBM, we find films on the diagnosis of anemia and the prediction of adult height.
Chapter 7 refers us to publications from the Inclusion Body Myositis Association. Unfortunately, this organization no longer exists. Some basic fact checking would have led the editors to discover that "The Inclusion Body Myositis Association became the Myositis Association of America in 1996, when it expanded to include polymyositis (PM) and dermatomyositis (DM). As of January 1, 2003, the name changed to The Myositis Association (TMA)." My quote is from The Myositis Association, https://www.myositis.org/about_tma/
I will also note that IBM is now under the umbrella of The Muscular Dystrophy Association and they also provide a lot of useful information on IBM, see: http://www.mdausa.org/home.html
In appendix A, on page 90, a list of IBM medications is compiled (notwithstanding the section on page 11 on treatment). This list is a "sample", one that only includes azathioprine and various corticosteroids. IVIG is curiously missing from this sampling; even more curious is where IVIG turns up - under the subsequent section on "complementary and alternative medicine." Again, the editor's lack of specific knowledge about IBM is illustrated in this section when they list an article on high-dose vitamin C therapy for IBM but fail to even mention the use of coenzyme Q10 and L-Carnitine in the treatment of IBM.
The section "finding studies on IBM" - information on dietary supplements lists several studies that do not appear to belong in the section, for example, a study on weakness progression in cases treated with methotrexate.
A more honest approach would have seen Icon publish one book on how to find and use research and medical information on the internet with chapters or appendices on each rare disorder. In the current book, only about 5 pages can be distilled on IBM and unfortunately, these materials are not very good.
The reviewer has IBM and has presented a great deal of information on the disorder in a web page that can be found at: index.htm