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Books

GENERAL

 

Bell, David S. The Doctor’s Guide to Chronic Fatigue Syndrome. New York: Addison-Wesley Publishing Co., 1994.

Dr. Bell’s guide, although ostensibly pitched to doctors, is not technical. The material is presented in a clear format, is easy to read, and is well organized. The strongest parts of the book are the overview and description sections. Dr. Bell’s book is a very useful introduction to the disease.

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Bell, David S. Cellular Hypoxia and Neuro-Immune Fatigue. WingSpan Press, 2007.

In this book, Dr. Bell theorizes that there is a spectrum of neuro-immune illnesses which produce cellular hypoxia (cellular starvation). These illnesses can be triggered by a variety of factors–viral, bacterial, environmental, or CNS trauma. No matter what the trigger, they all lead to a condition in which the body continues to produce inflammatory chemicals, notably nitric oxide. The end result is a hyper-aroused immune response that interferes with the cellular production of ATP, the body’s source of energy. There is a lot of research to support this theory (which has been explored more deeply at the molecular level by Dr. Pall). Dr. Bell, as always, writes in a clear style that is accessible to any reader.

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Berne, Katrina H. Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS). Alameda, Calif.: Hunter House, 1992.

This is one of the classics in the ME/CFS literature. It contains information on testing, symptoms, resources, and a history of the illness, which together comprise the essential information every person with ME/CFS must know. It has recently been updated.

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Bested, Alison, Russell Howe and Alan Logan. Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. Cumberland House (subsidiary of Sourcebooks, Inc.): 2008.

Hope and Help is a little book with a lot of practical advice. It contains information on the current theories concerning the cause of the illness, diagnosis, coping techniques, and treatment protocols.

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Blake, Nancy. A Beginners’s Guide to ME/CFS. Lifelight Publishing. February 4, 2013.

This 112-page book offers encouragement, practical suggestions, and praise for carers. Blake takes a common sense approach toward the disease, strongly advising rest and the avoidance of exercise, which will only exacerbate symptoms.

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Feiden, Karyn. Hope and Help for Chronic Fatigue Syndrome. New York: Simon & Schuster, 1990.

This is one of the better practical guides for coping with ME/CFS. It contains detailed and thoroughly researched information on the current theories concerning the cause of the illness, tests normally performed to help confirm a diagnosis, and standard treatment protocols. It concludes with an excellent resources section.

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Goldstein, Jay A. Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.

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and

Courmel, Katie. A Companion Volume to Dr. Jay A. Goldstein’s Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.

This book by Dr. Goldstein gives insights into the limbic system dysfunction that characterizes ME/CFS. Because it is geared to physicians, it is very technical. The companion guide by Katie Courmel provides the layperson with an easy-to-read interpretation of Dr. Goldstein’s work.

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Heckenlively, Kent and Judy Mikovits. Plague: One Scientist’s Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases. New York: Skyhorse Publishing, 2014.

This is the dramatic story of the rise and fall of XMRV, the retrovirus which was thought to cause ME/CFS. Dr. Mikovits, a twenty-year veteran of the National Cancer Institute, was at the center of what was to become a political scandal. The book starts with the founding of the Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno, and ends with her as a witness for the federal government against her former employer, Harvey Whittemore, for illegal campaign contributions to Senate Majority Leader Harry Reid.

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Hyde, Byron M, ed. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ottawa, Ontario: Nightingale Research Foundation, 1992.

The Cambridge Easter Symposium on ME/CFS held in Cambridge, England, in April 1990 forms the bulk of this book. Despite the fact that the 75 papers included in this volume represent research that is several years old, the information contained in them, and in the review chapters, is not outdated. Chapter topics include historical reviews of ME/CFS epidemics, ME/CFS in children, diagnosis, infectious origins of ME/CFS (viral research), skeletal muscle and heart involvement, neurologic injury, neuropsychological changes, food sensitivities, immunology, blood cell changes, and treatment. For anyone who wishes to explore the more technical aspects of ME/CFS, this book is a gold mine of information. As of this writing, it is available for the price of a membership in the Nightingale Research Foundation (see Appendix B).

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Johnson, Hillary. Osler’s Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. New York: Crown Publishers, 1996.

In this thoroughly researched book, Johnson tells the inside story of the recent medical and political events surrounding the ME/CFS outbreaks of the 1980s.

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Pall, Martin. Explaining “Unexplained Illnesses”: Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome and Others. New York: Harrington Park Press, trade division of Haworth Press, Inc, 2007.

This book lays out Martin Pall’s NO/ONOO‾ (“No! Oh, no!”) hypothesis in detail. The book is quite technical, which makes it tough going for the layperson. However, Pall has come up with a remarkable new paradigm for understanding multisystem diseases, which makes this book a valuable addition to any CFS/ME library. His section on treatments, and why they work for multisystem illnesses is important for everyone to read.

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Richardson, John. Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. NY: Haworth Press, 2001.

Dr. Richardson, a family physician in the U.K., treated more than 7000 patients (over a period of four decades) who had contracted enteroviral illnesses. Out of these, 1780 never fully recovered. Dr. Richardson kept careful notes on each and every one of these chronic cases, documenting the course of their illness, subsequent organ pathologies, and charting when and where the bulk of these cases originated (the late 1980s). His detailed case studies provide invaluable material for anyone hoping to understand the persistence and widespread effects of enteroviral infections.

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Rosenbaum, Michael, and Susser, Murray. Solving the Puzzle of Chronic Fatigue Syndrome. Tacoma, Wash.: Life Sciences Press, 1992.

The authors offer a wide range of theories and ideas regarding ME/CFS. Dr. Susser and Dr. Rosenbaum view ME/CFS as a complex disorder, and in light of the fact that a single agent or pathogen has yet to be discovered, they suggest treating ME/CFS as a mixed-infection syndrome. The authors test their patients for parasites, yeast, bacteria, and viruses and investigate possible underlying medical conditions that may mimic or worsen ME/CFS (such as hypothyroidism, adrenal insufficiency, environmental illness, heavy metal poisoning, and allergies).

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Shomon, Mary. Living Well With Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn’t Tell You . . . That You Need to Know. New York: HarperCollins, 2004.

This is a good, basic introduction to CFS/ME that covers a lot of ground without losing coherence. Written in an accessible style and well organized. Shomon’s book is probably the best place to start if you haven’t already done much reading on the subject.

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Simpson, Leslie O. PhD, Nancy Blake BA CQSW. Ramsay’s Disease – Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of ‘CFS.’ Amazon, 2012.

In this book Dr. Simpson describes his years of research and the history of the disease. “The contribution of haemorrheology to the understanding of and potentially effective treatment for the symptoms of ME continues to be ignored by the medical profession, therefore unavailable to people who have ME. Oddly-shaped red blood cells (clearly visible in micrographs) can’t deliver oxygen through the microcirculation, causing dysfunction in muscles, cognitive areas of the brain, and the endocrine system. Fish oil, genuine EPO, Vitamin B12 as hydroxocobalamin, and pentoxyfilline have each been found to address this issue in a significant proportion of people with ME, very much improving their well-being.”

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Vanderzalm, Lynn. Finding Strength in Weakness. Grand Rapids, Midi.: Zondervan, 1995.

 Ms. Vanderzalm interviewed 70 people with CFS, and drew on her own experience as a mother of children with ME/CFS (and ill herself) to write this book about the impact of CFS on a family. Her avowedly Christian perspective may put some people off. However, since it is one of the few books concerning this topic, the information it contains should be useful to all who read it. The Foreword is written by David Bell, M.D. To order, contact the ME/CFS Association of America, PO Box 220398, Charlotte, NC 28222-0398 (286 pages; $11.00).

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TREATMENT

 

Haavisto, Maija. Reviving The Broken Marionette: Treatments For CFS/ME And Fibromyalgia. Lulu, 2011.

Reviving the Broken Marionette features:

* Over 250 pharmaceuticals that can be used to treat CFS/ME and fibromyalgia
* Possible side effects, contraindications and drug interactions
* International availability and price range of each medication
* Considerations for surgery and vaccinations
* Over 1,000 references
* A glossary and index

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Myhill, Sarah. Diagnosing and treating Chronic Fatigue Syndrome: it’s mitochondria, not hypochondria. London: Hammersmith Health Books, 2014.

Dr. Myhill explains the importance of healthy mitochondria, how we can measure their functioning and what we can do to keep them healthy, or restore them to health if problems arise. Contents include: The clinical picture: symptoms; useful medical tests; tests not worth doing * Mitochondria and chronic fatigue syndrome * Treatment for mitochondrial metabolic dyslexia * Solid foundations for recovery and good health * Other important factors to look after * Toxic and viral causes of CFS * Practical details – where to start.

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Teitelbaum, Jacob M.D. The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy! New York: Avery, 2013.

Dr. Teitelbaum presents strategies for using medications and nutritional supplements to the most recent alternative therapies and recommendations for lifestyle modifications. Dr. Teitelbaum is best known for the SHINE Protocol, addressing Sleep, Hormonal support, Infections, Nutritional support and Exercise.

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Verrillo, Erica. Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Electronic Edition). 2012.

This book includes over 100 effective treatments, from antivirals to vitamins, as well as locations of specialists and clinics, Internet ordering information, and national, local, and international ME/CFS organizations. New and expanded sections include doctors’ protocols and research on the causes and mechanisms of the illness, all written in concise, easy-to-understand language. Every aspect of the illness is thoroughly examined, from diagnosis to an in-depth discussion of symptoms, from traditional to alternative therapies to essential coping strategies. The new edition contains chapters for those coping with multiple chemical sensitivities and dietary restrictions, as well an expanded section on children and adolescents with ME/CFS.

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​Síndrome da Fadiga Crônica: Um Guia de Tratamento (Em Português)

Síndrome da Fadiga Crônica: Um Guia de Tratamento – agora completamente revisado e atualizado – inclui mais de 100 tratamentos eficazes, desde antivirais até vitaminas, bem como locais de especialistas e clínicas, informações para comprar pela Internet e organizações nacionais, locais e internacionais sobre a SFC/EM. Seções novas e ampliadas incluem protocolos e pesquisas de médicos sobre as causas e mecanismos da doença, todos escritos em linguagem concisa e fácil de entender.

Cada aspecto da doença é examinado detalhadamente, do diagnóstico a uma discussão profunda dos sintomas, de terapias tradicionais à alternativas até estratégias essenciais para lidar com a doença. A nova edição contém capítulos para pessoas lidando com sensibilidades a vários produtos químicos e restrições alimentares, bem como uma seção ampliada sobre crianças e adolescentes com a SFC/EM. Síndrome da Fadiga Crônica: Um Guia de Tratamento, segunda edição, ainda é o guia de referência mais completo sobre essa doença.

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Syndrome de fatigue chronique: guide de traitement, deuxième édition (en français)

Ce livre de référence unique – maintenant révisé et mis à jour – comprend plus de 100 différents traitements efficaces, en passant des antiviraux aux vitamines, ainsi que des emplacements de spécialistes et de cliniques, des informations sur la commande par Internet et des organisations du SFC/EM au niveau national, local et international. Des sections nouvelles et élargies comprennent des protocoles de traitements de divers médecins spécialistes et les diverses recherches sur les causes et les mécanismes de la maladie, tous écrits dans un language concis et facile de compréhension.

Tous les aspects de la maladie sont soigneusement examinés, en partant du diagnostic en allant à une discussion approfondie des symptômes et en passant par les thérapies traditionnelles aux thérapies alternatives et aux stratégies d’adaptation essentielles. La nouvelle édition contient des chapitres pour ceux qui font face à de multiples sensibilités chimiques et des restrictions alimentaires, ainsi qu’une section plus appronfondie portant sur les enfants et les adolescents atteints du SFC/EM. Le livre Syndrome de fatigue chronique: guide de traitement, deuxième édition, demeure le guide de référence le plus complet sur cette maladie complexe.

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Wilkinson, Steve. Chronic Fatigue Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co., 1990.

This is one of the more detailed books on alternative treatments for ME/CFS. Wilkinson worked as an alternative health care practitioner in Great Britain and treated a number of patients for ME before he contracted the illness himself. The sections describing the benefits of acupuncture, aroma therapy, hypnosis, meditation, and dietary supplements, while brief, offer a good sampling of some of the alternative treatments considered useful for many ME/CFS symptoms.

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PERSONAL ACCOUNTS

Fisher, Gregg Charles. Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS. Grand Central Publishing; Revised and Upd ed. edition, 1997.

This book is both a personal account of Gregg Fisher and his wife’s illness and a ME/CFS guide. He also has many helpful suggestions for dealing with the Social Security Administration, coping with the subjective fallout of having a major illness (emotional upset), and maintaining relationships with incredulous friends and acquaintances. The original book was revised and updated in 1997.

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Gilderdale, Kay. One Last Goodbye: Sometimes only a mother’s love can help end the pain. Ebury Press, 2011.

“Lynn Gilderdale was just 14 when she was struck down by ME, leaving her paralyzed and in constant agony. Over the next 17 years, she became desperate to escape her miserable existence, even begging her mother to help her die. So, one night, when Kay found Lynn attempting suicide, she was forced to make an impossible decision. Continue watching her child suffer or help her end the pain? Eventually, fighting her every instinct, Kay helped her precious daughter take a fatal overdose. But while Lynn was finally free, her mother faced a fresh agony—a possible lifetime behind bars. The highly controversial trial that followed opened a fierce public debate on assisted suicide. Is it murder or mercy? Here, in her heartbreaking story, Kay reveals the harrowing truth behind the headlines and the desperate lengths a mother will go to for the love of a child.”

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Kenny, Timothy. Living With Chronic Fatigue Syndrome: A Personal Story of the Struggle for Recovery. New York: Thunder’s Mouth Press, 1994.

This book documents Tim Kenny’s struggle with severe ME/CFS. Kenny, a journalist, wanted to share his own battle with ME/CFS to inspire others to keep up the fight. His essay on fatigue is particularly good.

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Rehmeyer, Julie. Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. Rodale Books, 2017.

Julie carved out her own path to wellness―and uncovered how shocking scientific neglect and misconduct had forced her and millions of others to go it alone. In this memoir, she describes how her illness transformed her understanding of science, medicine, and spirituality. 

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NOVELS

King, Roger. Love and Fatigue in America. Madison: University of Wisconsin Press, 2014.

“When an Englishman receives an invitation from an American university, he embraces it as a jubilant new beginning. Instead, on arrival, he is stricken with a persistent inability to stand up or think straight. Diagnosed with ME disease—also called chronic fatigue syndrome—he moves restlessly across his newly adopted country, searching for a love and a life suited to his new condition. Love and Fatigue in America briskly compresses an illness, a nation, and an era in a masterly blend of literary forms.”

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