Myositis Books

This was a very interesting, although somewhat disheartening, book. It is a group of case studies told by the patients who suffer from myositis. Often the cases seemed quite hopeless, therefore, it was hard for someone also suffering the disease to have much hope. The book also should have been edited for grammatical mistakes.

There are very few publications out there providing supporting information for Myosis sufferers. This one provides a great insight into the disease as well as the specific variations ie (DM). The case studies are particularly interesting and useful. It's great to see how others are coping with their disease and how most are recovering well. This is an American publication, I have not managed to find any UK publications for this condition.

In two medical training centers, I first saw the book, "Coping with a Myositis Disease." The real life stories of those suffering from a Myositis disease was written from the heart of the writers, in their own words without editorial interference.

The book can not be praised enough for the benefits especially for new Myositis patients.

No wonder the book has a five star rating and first place Best Seller of Myositis books.

Finally, Mr. Kilpatrick was able to capture the common person's feelings about dealing with Myositis.

Thank you, Amazon.com, for making the book possible on the Internet.

When I gave my story to be included in this book, it was explained to me that it would be in my own words. This made me a little nervous and I took pains to use proper spelling and grammar. Well, my published story in the book contains numerous spelling and grammatical errors which were not made by me. This is very distressing for me. I must not be the only one, because this seems to be a pattern throughout the book. Anyway, all this aside, this book is a must have for anyone diagnosed with myositis. The stories helped me so much. People have thanked me for my contribution. How I wish this would have been available when I was newly diagnosed! But I do feel a great need to set the record straight in that the words of the patients were published with grammar and spelling errors they did not make. This must have happened during editing or data entry. Still, the book is very readable.

As a person diagnosed with Signal Recognition Particle Antibody Syndrome, a very rare and agressive type of Polymyositis, I feel compelled to "warn" Myositis patients about this book. Yes, it does make patients realize others are experiencing the same
debililitating symptoms you are; however, I found this book to be VERY NEGATIVE. It doesn't list the positive aspects of this disease today--there is hope with ongoing research; knowledgeable specialists; medicines available to relieve symptoms; and effective therapies. I KNOW personally--a positive attitude is essential in successfully dealing with this difficult illness.

I'm 19 and I've had DM since I was 2. This book (edited by my doctor Lauren Pachman) is extremely informative and has everything you need to correctly help you or your child. I highly recommend this book to anybody that has Myositis or anybody that is a parent or family member of somebody with any form of Myositis.

One of the very few publications for this very rare condition. I found it useful but very technical and granular. I had to force myself through the more technical sections, but found enough useful to assist in helping a friend. I certainly encourage readers to obtain this reference book even though it is pricey and tough reading. It is one of the very few tittles on the subject. My health care contacts at Stanford Medical, and Queens Hospital in Hawaii found it useful. One thing there is not. There is no cure, and no recognized treatment prescribed. I look forward to that day.

The novel offers a series of case studies to the reader but fails to win my respect due to its poor detail. It reveal much about myositis ossificans strictly through the treatment of one patient named greg d. I would not reccommend paying 48$ for a book that really doesn't offer much. Good try but try again buddy. A rating of five is better than what it deserves!

This book can be a useful tool for people already familiar with Dr Sarno's approach and books (The Divided Mind and The MindBody Prescription), but I would strongly recommend to read Dr Sarno's books first. BTW, if you happen to read a review here linking this book to yoga and warning Christians against it, don't pay any attention to it. This book is not about yoga at all, and the review in question is... weird, to say the least, and completely misleading. I actually did report about it to Amazon, because it's more spam than review, really.

This book is written with a strong influence of New Age philosophy, Eastern Mysticism, Astanga Yoga (the word ashtanga refer specifically to the eight spiritual practices outlined by the sage Patanjali in the Yoga Sutra) and Hatha Yoga all mingled together.

In Hinduism there are many different forms of "Yoga" which are paths of practice and Astanga Yoga & Hatha Yoga are one of many that leads the aspirant to the ultimate goal of union with divinity (Hindu gods) and the unity of all of Creation.

Many erroneously believe they can practice yoga disciplines, postures, breathing, and focusing techniques devoid of yoga's spirituality, not realizing that yoga is an inherent part of Hindu philosophy which teaches man and nature are one with divinity.

Today, yoga is experiencing a worldwide renaissance and in America has more than 70,000 yoga teachers working in 20,000 locations. Although viewed primarily as fitness instructors, *these trainers are in reality the leading missionaries of eastern religion* in the west. The twenty-seven billion dollar a year yoga industry is marketed to Christians, students, athletes, businessmen, pregnant women and senior citizens promising solutions for stress reduction, concentration problems, and issues of self confidence.

Astanga Yoga & Hatha Yoga are in reality a pagan import from the East, yoga has now become mainstream in the church through "Christ-centered yoga classes" designed to help improve spirituality and experience "the presence of God". But PLEASE BEWARE as yoga's mysticism is NOT compatible with historic Christianity no matter how it is packaged!

Rev. Jimmy Hanratty

PS: In all fairness I must add that the book has some very good insights and valuable information on healing from TMS if one knows how to eat the hay and spit out the sticks, they can benefit from the book. If all the suggestions in the book were followed you would be dabbling in Eastern mysticism and as a Christian I feel Christians should be warned.

A strong Christian could probably read the book, discern the mysticism and befit from the book. A weaker Christian could possible be sucked into pagan religious practices and disciplines if all suggestions in the book are followed. My advice is, if you read the book be cautious not to accept the New Age influence or Easter religious disciplines.

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: http://members.shaw.ca/btillieribm/

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: http://members.shaw.ca/btillieribm/