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Chronic Fatigue Syndrome: A Treatment Guide, by Erica Verrillo.

November 16, 2012

Chronic Fatigue Syndrome: A Treatment Guide, by Erica Verrillo. Kindle Edition, 2012. 2nd edition. 817 pages

An incredibly complete and up-to-date encyclopedia of information for CFS/ME patients and those who want to understand and help them.  Includes everything from the latest research to analysis of treatments to tips for daily living.

For the past dozen years I have struggled with CFS/ME.  During that time I tried various doctors and practices, and followed various online sources for new information.  I remain severely limited, particularly by my inability to sustain energy. I requested this book, curious but skeptic of finding anything new and helpful.  I found it to be the best single source on CFS/ME.

Erica Verrillo gives up all you ever wanted to know about chronic fatigue, or rather everything that is known today about this confusing condition.  Although she cannot eliminate all the confusion and uncertainty, she explains debated issues well, using simple scientific language.  There is no known cause or reliable cure, but as she points out, there is abundant information which enables many sufferers to obtain relief and sometimes an end for their suffering.  Even its name is contested: Americans calling it Chronic Fatigue Syndrome and researchers elsewhere naming it Myalgia Encephalomyelitis.  Despite a core group of symptoms, not all patients respond identically to CFS or to potential medicines and protocols.  Part of the problem, Verrillo says, is that CFS affects multiple organs and multiple body systems.  Its multifunctional and varied nature does not fit into the medical establishment’s areas of specialization.   This book is her attempt to bring scattered CFS/ME information into a conceptual framework so that patients and doctors can better understand its symptoms and use a wide variety of tested possibilities to lessen its impact.

Verrillo is a survivor of CFS/ME, not a doctor or a researcher.  In creating this book, she worked closely with some of the best authorities on CFS, such as doctors Cheney, Lapp, and Teitelbaum.   This is a second, expanded edition of  a book she co-authored fifteen years ago.  Since then, research about various aspects of CFS/ME has exploded.  Verrillo not only surveys these findings, she provides abundant references to the research literature so that others can study it in more detail.  Some of the references are to traditional books and journal articles, but many are to online sources which have been particularly useful in spreading information about CFS.

This book is meant to be a treatment guide, not one to be read from cover to cover, and Verrillo has organized it well with a detailed table of contents and cross-references.  Some information is deliberately repeated in more than one place.  Sometimes I wished for an index.  The organization would probably function better in the hardcopy edition, rather than the ebook one I was using.

In the opening section, Verrillo provides general information about CFS/ME.  She describes its growing recognition, the confusion over its name and definition, its varied symptoms and overall patterns of affecting several systems within the body.   Like others she discusses the continuing need for a clear biomarker, a better name and definition, and increased understanding of how it functions.  She is also clear that despite the lack of these, treatments are moving forward.  Then she discusses the various theories of causes, including viruses, bacteria, mold, the environment, genetics and the possibility of combinations of these.  At all times she makes clear that CFS can be relatively mild to totally disabling and that some proposed treatments, such as exercise regimes, can be harmful to those severely ill.

The next section deals with the various body “mechanism” which are implicated in CFS and the theoretical explanations behind treatment protocols.  She carefully lays out the inter-relations of the neurological, immune, endocrine, digestive, and vascular systems. In addition, she explains theories based on cellular and mitochondrial failure.

Examples of different doctor’s protocols for treatment show how the theories are applied in actual patient care.  Specific discussion is provided of various symptoms which CFS/ME patients share.  Hers is a more inclusive list than the usual one of potentially defining symptoms and includes general problems that appear in disproportionate numbers of CFS/ME patients.  I had no idea that my strange migrating pains, my poor vision, and my inability to finish sentences were related to CFS until she explained the connections, sometimes citing literal connections within the brain.  The information made me feel less alone.

Extensive discussion of particular prescriptions drugs, supplements, and procedures follow.  Here again the list is exhaustive and possible advantages and disadvantages are provided for each.  Looking up many of the things I have tried was helpful and left me ready to try more. Verrillo is careful to point out that many pills and practices have the potential to relieve stress and anxiety which aggravate symptoms, even though they will not correct cellular dysfunction.

Last but not least is the section on daily coping with CFS/ME.  I found Verrillo’s discussion of lowering stress levels particularly helpful.  While I enjoy election politics and college basketball with my husband, maybe I would feel better if I limited my TV watching.  In addition, Verrillo includes information on diet, removal of home toxins, and special discussion of the problems of CFS/ME for children and adolescents.

More useful information is provided in the appendix of the book.  There are lists of resources, again many online; relevant organizations; access to doctors and clinics who specialize in CFS/ME; and mail-order supplies.

I strongly recommend Verrillo’s book to anyone who has CFS/ME and anyone who wants to aid someone who does.  It should be required reading for all medical care professionals, especially for specialists in various medical categories who encounter CFS/ME sufferers.   I wish I could give a copy to all the doctors and nurses I have had to deal with over the past decade who have no clue how inappropriate their procedures are for someone with CFS.

8 Comments leave one →
  1. November 16, 2012 12:35 pm

    Well this is all extremely interesting to me! Thank you for posting about this book. I met up with a friend the other day who is a bioinformatics researcher and he’s become interested in chronic fatigue since knowing I have it. He told me that viruses can become attached (might not be the right verb) to our genomes, meaning that they get built into our systems and therefore can be activated over and over again with the right triggers. He thinks this must be a contender for one of the explanations why cfs can last so very long and come and go. I’m so glad that some books are getting out there that give us some information and some help!

    • November 17, 2012 12:33 pm

      Litlove, that’s very interesting because I get blood blisters in my throat for no apparent reason other than that I am stressed, and these are almost certainly a manifestation of a herpes virus that seems to lurk in my system and just wait to pounce when I am at my lowest.

    • November 20, 2012 9:03 am

      Yes. I felt good just knowing that the research being reported here is happening. Genes are one piece, but there are other mechanisms that make problems persist and return. I like the way she describes the various theories as complimentary rather than competing. Each revealing one aspect or affected bodied system of the syndrome. My preferred way to approach “truth,” and a relief to see it used in medicine. I liked having a better sense of what is going on with my body even though there are no simple answers. I think you would, too.

  2. November 17, 2012 12:31 pm

    While I don’t have cfs, I do have health problems which are very similar and have the same type of life limiting symptoms. I’m sure this would be a very useful read. Thank you for posting about it.

    • November 20, 2012 9:08 am

      Thank you. Yes, I think you would find much in this book to be relevant to your problems. She discusses overlap between CFS and related diseases and bodily mechanisms that not CFS-specific. Virus cause or trigger such a range of things. Maybe some of her suggestions would be helpful, but I also appreciated her more theoretical explanations. Good luck and know that I can sympathize with you.

  3. November 18, 2012 4:35 am

    Good for you Marilyn for posting this. I know a couple of people with daughters with the condition or something related. I will pass it on to them.

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