Reviews of CFS/ME books
This page contains reviews of the CFS/ME books I've read. Since you're here, you might be interested in my own CFS/ME/fibromyalgia treatment book, which contains over 250 medications that can be used to treat these illnesses.
Osler's Web - Inside the Labyrinth of Chronic Fatigue Syndrome by Hillary Johnson
I decided to get this book after reading numerous highly praising reviews of it. Still the book was even more enlightening than I expected. It ranks among the best non-fiction books I've ever read and I've probably read a four-figure number of them. It is a thoroughly researched journalistic account about the problems the CFS/ME patients and researchers have encountered in the medical community. It focuses on the CFS/ME epidemics and the situation in the 80s and early 1990s in the US, but also offers some international perspective and information about the history of CFS/ME.
The premise of the book is that CFS/ME is a very serious, sometimes life-threatening, illness which is caused by a viral infection. It reads a bit like a detective story: the researches always think a cause is finally found, but turns out it isn't the real one and then a new suspect is needed. The book describes in detail a lot of the research done in the 80s and early 90s. Osler's Web makes it clear that CFS/ME is both a neurological and immunological illness and that cognitive problems are the hallmark symptom, even more important than fatigue. The author's conclusion about retrovirus being the culprit is somewhat controversial.
Osler's Web is not a self-help book or a treatment guide, though it contains some valuable medical information about the illness and its treatments. The style is brilliant and it should be easy to read even with brainfog, but this is also one of he most depressing books I've ever read, both due to the disability it describes and the unbelievable contempt society shows towards CFS/ME sufferers. The book was published in 1995, but we all know that the situation isn't exactly that much better now.
Chronic Fatigue Syndrome: A Treatment Guide by Erica F. Verrillo and Lauren M. Gellman
I got this book because it was recommended on many websites and not without a reason. It lists dozens of different treatment options in great detail, which is satisfactory for a medicine and pharmacology nut like me. But it should be easy to read even if you're not big on scientific jargon. Besides the list of treatments the book describes the most common symptoms of CFS/ME (including less frequently mentioned things like bladder dysfunction and weather sensitivity) and gives tips for treating them. It also lists some of the possible causes and tells the story of a few CFS/ME patients.
The actual treatment list takes up a half of the book. It's divided into three parts: Pharmaceuticals, Nutritional supplements and Botanicals and Alternative and Complementary Therapies, after which follows a chapter about coping and management strategies, including children with CFS/ME. The different treatments are described in detail and are well researched, even though a knowledgeable person can see that the book hasn't been written by doctors and probably about half of the articles contain at least one minor error if you check their contents thoroughly.
What bothered me (and was one of the things that prompted me to write my own book) was that numerous effective treatments (such as nootropics) are not listed, even though they were known at the time of the writing. Of course it's impossible to be completely conclusive, but that's what the book attempts. Some unconnected treatments are lumped together (such as ginseng and Siberian ginseng, two unrelated plants). In general I found it puzzling that there are only a few pages of information about herbs, most of it generalized, even though there are dozens of herbs used in the treatment of CFS/ME and you can't really generalize their effects, side effects or safety.
Running on Empty: The Complete Guide to Chronic Fatigue Syndrome by Katrina Berne
This book is written by a clinical psychologist, which might seem like a warning sign of a psycho babble book trivializing CFS/ME. But Katharina Berne suffers from CFS/ME herself and she really knows what she's talking about. The perspective is more like that of a doctor than that of a psychologist. There is a lot of psychologic talk in the book, but it's mostly very practical and down to earth, e.g. how to communicate with your loved ones about your illness.
Besides the psychological stuff there's plenty of practical information about every aspect of CFS/ME, including symptoms and theories of the illness's origin. There are lists of pharmaceuticals used in the treatment of many different symptoms and curiously the book lists many medications that the CFS/ME Treatment Guide doesn't. I was delighted to see that even nootropics are mentioned. I did spot some errors, but they were mostly very minor and unimportant to the big picture. There is even some information about setting up a support group or a CFS/ME newsletter.
The book is well-written and researched, neatly organized and has a down-to-earth perspective. It's easy to read even for someone with brainfog. There is some inevitable medical jargon, but most of it is explained. One thing I disliked is the implication that all relationships are heterosexual. Another thing that bothers me is the amount of repetition. The book appears more like something that's supposed to be read as a whole instead of a reference book, so it seems weird that many things (e.g. symptom lists) are repeated over and over.
Recovering from M.E.: A Guide to Self-empowerment by William Collinge
I borrowed this book from a friend, but I wasn't too impressed with it, starting from the corny title. The premise of the book is that CFS/ME is a very real illness of body (not of the mind), but your mind is so powerful that with it you can overcome even a physical illness, if you just believe in recovery and are willing to work for it. Sounds like bullshit, doesn't it? The book is written by a doctor, but the majority of it consists of "Mind/Body Medicine" and there's a total of about three pages listing actual medical treatments.
The book describes a variety of mental exercises that can help with coping with CFS/ME and even the actual disease process, including meditation, imagery, introspection and even discussions with your inner child. The book makes the assumption that everyone has supportive family members that help out with carrying out these exercises. Some of the tasks feel very rational and sensible while others seemed more questionable to me. I like the point the book makes that emotions are never negative and shouldn't be pushed back. The perspective of the book resembles cognitive-behavioral therapy.
One of the worst problems about the book besides its questionable premise is that it doesn't really talk about the most severe forms of CFS/ME. For many people with CFS/ME even the simple, mostly mental exercises in this book are too much, as they may not be able to get out of bed or even speak. It should be obvious to everyone that overcoming a mild physical illness with the power of attitude and imagery may be possible at least for some, but CFS/ME is usually too severe for that.
The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome edited by Byron Hyde
This book is exactly what its name describes, a thorough scientific explanation of CFS/ME written by the best experts - real experts and not self-declaimed phonies who just want to sell their latest supplement regime. Even though it was published in 1992 it's still full of highly valuable information. As the book is compiled from papers and articles written by many different doctors there is some variety in quality and some articles I probably would have left out. There's plenty of content about the different symptoms of CFS/ME and some articles also focus on medical treatments.
The book describes CFS/ME as a post-viral neurologic illness that has been described already more than 50 years ago. Byron Hyde and many other authors believe that CFS/ME is caused by an enterovirus similar to (or even the same as) poliovirus. However there are articles from a variety of authors, so not everyone shares his view and some writers vouch for the retrovirus theory like Osler's Web. One thing I find strange is Hyde's frequent assertation that CFS/ME is always worst in the beginning and cannot be progressive, which doesn't match my perception at all.
Despite the scary appearance the most important articles aren't that difficult to read, though knowledge of medical language helps a lot. Most of the illustrations consist of pictures of the contributors. The writing style of doctors is more straight-forward than literary, making it easy to follow. There are quite a bit of typos, which don't really hinder the readability, but they are a small nuisance. The biggest problem with the book for someone with CFS/ME is that it is physically very heavy - 800 large pages and a hard cover, making it hard to lift and not very suitable for reading in bed.
Betrayal By The Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders by Jay A. Goldstein
This book really isn't for everyone. It probably isn't for most people. And it's not because it's bad or because of its attitude, but because it's so incredibly technical. It tackles everything on a very scientific manner, on a receptor level. It is mostly neuropharmacology which isn't the area of medicine which is the easiest to understand. Even with my very extensive knowledge about the subject I didn't understand everything - and the average doctor would understand much less. There are some pictures enclosed, but aside from the SPECT scans, they too are quite cryptic.
The book describes Goldstein's theory that CFS/ME, fibromyalgia and some other conditions are neurosomatic illnesses. This term should not be confused with psychosomatic, but instead it refers to the idea that the conditions and all their secondary effects (like immune dysfunction and IBS) are caused by brain dysfunction and thus can effectively be treated by drugs that modulate the brain either directly or peripherally. These drugs include e.g. antiepileptics and blood pressure drugs, even eye drops. Only a few of them are psychiatric drugs. He describes often seeing 90% improvement in the patients.
Goldstein's hypothesis is compelling and everything is backed up with references. It also does not discount most other theories, such as infections. His approach is very practical. He explains the usage of dozens of medications and often supplements it with case reports. He attempts to treat the origin of the illness, not just the symptoms. Even if you don't understand everything the book is quite fascinating. If even half of what he theorizes is true he should be regarded as one of the most important figures of modern medicine. He has been criticized a lot, but that's what happens to people who are well ahead of their time. And he still is, even though the book was published over a decade ago.
Tuning the Brain: Principles and Practice of Neurosomatic Medicine by Jay A. Goldstein
Tuning the brain continues from where Betrayal by the brain left. Goldstein has greatly expanded on his theories and the result is a much bigger volume, again with some full-color pictures enclosed. The book goes through over a hundred medications, many in detail, others just in passing. Goldstein also reviews the most important abstracts from some neuroscience conferences and their relevance to CFS/ME. It is hard not to be fascinated by Goldstein's enthusiasm, knowledge and attitude. He does not just have a brilliant mind, but it is easy to see that his patients' welfare is his priority number one.
The book is so stock full of information that a single page provides dozens of intriguing tidbits, both practical and theoretical ones. Goldstein goes through every possible neurotransmitter and receptor and their functions in different parts of the brain. He also gives more information about the choice of medications in this book (as he'd better do, because he lists so many of them), including an "algorithm" guiding the selection process (such as if A causes side effects, try B, if that gives a partial response, move on to C). He also describes his unique approach of using many unusual medications transdermally, intranasally or as eye drops.
Even if you understand neuroscience and neuropharmacology, the book contains a lot of information which isn't really relevant to a patient. E.g. in the first 100 or so pages, where Goldstein describes his personal history as a doctor, his conflicts with more traditional approaches and the difficulties of neurosomatic practice. While a little bitter, it is very well written and very interesting to read, even humorous at times. The worst problem in the book as a whole is that it could be better structured. Some parts feel a bit chaotic and almost stream of consciousness like (while still polished).