Reading about CFS/ME

At the beginning the typical Patient Advocate knows very little about this illness. However the PA has no problem seeing that this illness involves profound fatigue. Very quickly the PA finds out that this disease avoids all specific classifications that one has learned to associate with other diseases. CFS/ME is thought to be a multi-system illness - but what does that mean and how does one break it down? The PA learns about CFS/ME very slowly. It takes time, persistence and discipline.

Where does one learn about this illness? A good place to start is with reading books. Many books are available to the Patient Advocate. Jacob Teitelbaum’s Fatigued and Fantastic is a helpful book. Teitelbaum has a great deal of practical experience with treating CFS and is widely respected in the field, currently running the Fibromyalgia and Fatigue Centers. Other people say negative things about Dr. Teitelbaum - that he is a rip-off and is only into making money. You can believe this or not. This kind of negative thinking is endemic to the subject of CFS/ME.

The first thing that a Patient Advocate has to decide is whether the PA is going to try to learn the established but fluid variables of this disease, or whether he is going to get sidetracked in many of the contestations surrounding this disease and it’s history. This particularly Patient Advocate tries to maintain his objectivity with the goal of making his daughter better. This is his task. The PA does not have to find the larger keys to all the subsets of this disease; he only has to help find the solution (or partial solution) to one subset – his patient’s. This in itself is a big task. The Patient Advocate realizes first-hand that CFS/ME is a heart-rending disease, but his real responsibility is to his own patient. The PA chooses not to get misdirected in an already confusing field. If his efforts could be helpful to others, this certainly would be an added bonus.

Just getting through Teitelbaum's book is a daunting task. At first it seems impossible to master this book. It is all so incomprehensible. The PA needs to keep after it. This book needs to be read many times over months and years. The PA can throw out parts of the book that do not apply to his patient's situation. For instance if the patient does not have pain as a primary symptom, the PA can skip that part. Other, more relevant parts can be read and memorized. At first much of the information seems incomprehensible, and the treatments too many and with too much overlap. Does the patient take all these items? Could this be possible? Jacob Teitelbaum’ book should be placed prominently on a shelf, where it will be the target of many, many readings in the coming months and years. This PA suggests that you start here. Other people might suggest starting with another book.

Over the past five years, this PA has read many books touching on the subject of CFS/ME. Sometimes the PA finds books in the public library down the street or in used bookstores. Mostly the PA buys online at amazon.com or abe.com. This habit continues to the very present when the PA has just bought two older books - The Canary and Chronic Fatigue and The Brain Diet. Both of these books drifted into his field of vision in relation to an important topic: gut ecology.

These are some of the books that the PA has on his shelf:

General CFS/ME books:
Your Symptoms are Real by Benjamin Natelson
Reviving the Broken Marionette by Maija Haavisto
Explaining “Unexplained Illness” by Martin Pall
Chronic Fatigue Unmasked by Gerald E. Poesnecker
Encounters with the Invisible by Dorothy Wall
Desperation Medicine by Ritchie Shoemaker
The Promise of Low Dose Naltrexone Therapy by Moore and Wilkinson
Chronic Fatigue Syndrome and Fibromyalgia by Alison Bested
Betrayal by the Brain by Jay Goldstein
Chronic Fatigue, Fibromyalgia and Lyme Disease by Goldberg and Trivieri
Mold Warriors by Ritchie Shoemaker
Missed Diagnosis by Byron Hyde
Online CFS book by Sarah Myhill

Hormones: Thyroid and Adrenal
The Hormone Solution by Thierry Hertoghe
Adrenal Fatigue by James Wilson
Living Well with Hypothyroid by Mary Shomon
Stop the Thyroid Madness by Jamie Bowthorpe
The Thyroid Solution by Ridha Arem
Thyroid Power by Richard Shames
Metabolic Treatment of Fibromyalgia by John Lowe
What Your Doctor may not tell you about Hypothyroidism by Kenneth Blanchard

Diet and Gut Ecology:
Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall
Gut and Psychology Syndrome by Cambell-McBridge
Children with Starving Brains by Jacquelyn McCandless
The Brain Diet by Alan Logan
Digestive Wellness by Elizabeth Lip ski

The PA does not pretend to have digested all the information in these books. The PA reads these books to get a sense of the parameters of this disease. The Patient Advocate returns to various books in unfolding circumstances and extracts specifics that advance his thoughts. The PA does not have any training to master these subjects. What the PA does have is the ability to form generalized concepts about possible directions regarding research and treatment. The PA is not playing doctor. The PA is more of a guide, a scout, a gatherer or a coordinator.

The PA would like to mention in particular a book by Maija Haavisto, a young Finnish journalist. Maija got "sick and tired" of the lack of knowledge of doctors and decided to write her own book. The book is entitled Reviving the Broken Marionette, and it is the most comprehensive and up to date reference on existing treatments for CFS/ME. It is a winner.