Treatment and Overviews: Book on Chronic Fatigue Syndrome

Beating Chronic Fatigue Syndrome: A Step By Step Guide to Complete Recovery by Dr. Kristina Downing-Orr (2011)

A recent entry to the ME/CFS treatment field, ‘Beating Chronic Fatigue Syndrome’ makes a startling promise (‘Complete Recovery; in its title. A psychologist who recovered fully from a severe case of virally induced CFS, Dr. Downing-Orr presents an intriguing blend of body (supplements/drugs) and mindfulness practices she asserts can help most people can recover from this disorder.

Based on the work of Dr. Mason Brown, Downing-Orr provides a ‘medical path’ using pharmaceutical drugs and supplements and a nutritional path employing supplements to improve circulation, the gut, the immune system, adrenal functioning and then dives into mindfulness techniques to eliminate beliefs and negative thoughts she believes impact an already over-burdened stress response system.

What Nurses Know….Chronic Fatigue Syndrome – The Answers You Need From the People You Trust by Lorraine Steefel (2011)

Lorraine Steefel’s daughter has had chronic fatigue syndrome since 1995. A recent addition (2011) to ME/CFS treatment books, this relatively short introduction to ME/CFS (120 pages) has received good reviews from several professionals. Dr. James Oleske, MD, former chairman of the federal advisory committee on CFS (CFSAC) stated the book provided knowledge and compassion.  Patricia Fennel reported that the book “is a valuable contribution that will be welcomed by nurse practitioners and their patients..(and) is an important addition to their clinical tool kit…(which) addresses the physical and emotional concerns of CFS, acting as a compassionate guide for patients and families” and Bruce Campbell, creator of the CFIDS Self Help Program, stated “Those looking for an introduction to Chronic Fatigue Syndrome will find much useful information in this book.

Reviving the Broken Marionette by Maija Haavisto (2011)

Another treatment book I thought…….Dr. Teitlebaum’s books had pretty comprehensively covered the waterfront for me on that end. What more could a patient authored book offer? It turns out – a lot. Maija Haavisto is a Finnish writer with CFS who’s health was declining rapidly when she found a drug, low-dose Naltrexone. (LDN), that stopped the progression of her illness and improved many of her symptoms. (She used a draft of her book to convince her physician to try it.)

“Reviving the Broken Marionette” focuses on the pharmaceutical drugs. First how each class of drug works and why it might be applicable is covered, then how each drug works, study or physician information on each, it’s possible side effects,  and cost and availability in different countries.

I found  treatment after treatment option I had never heard of.  The chapter on Nootropics – “smart drugs” that skirt the boundary between stimulants and mood altering drugs (and are usually quite well tolerated) was eye-opening. I learned that Dr. Goldstein used ergoloid , a strong anti-oxidant that improves oxygenation to the brain and is used to treat migraine  to good effect in some of this patients? Or that vinpocetine, which has anticonvulsant properties and improves brain microcirculation might be able to increase physical endurance in CFS?

Besides covering all the antimicrobrials, antimicrobrials, antivirals, beta blockers, corticosteroids, cholinesterase inhibitors, etc., etc. used in CFS  an impressive section on experimental therapies is offered. (Did you know that tadalafil (Cialis), which is related to Viagra, improved shortness of breath and improved exercise tolerance in one study? Or that some people with ME/CFS have noted improvement from oversensitivity after using the motion sickness drug scopolamine? Or that theophylline might be able to help neutrally mediated hypotension (low blood pressure upon standing) in ME/CFS?)

There’s ibudilast, an anti-inflammmatory, anti-allergic vasodilator used in asthma and multiple sclerosis – could it have neuroprotective effects in ME/CFS as well? How about monteleukast (singuliar) – an anti-inflammatory helpful in interstitial cytisus – might it have a role to play?

Did I mention the book also includes studies on the so-called allied disorders such as irritable bowel syndrome and  interstitial cytisus? The book has a good index that can be helpful in tracking down treatments for symptoms and everything is fully referenced with over 1,000 citations. This 350 page, handsomely designed book is clearly a work of love and Maija’s commitment to uncovering the last pertinent fact on every possible pharmaceutical treatment is impressive indeed. (Her web site contains regular updates on the drug findings for ME/CFS and Fibromyalgia – the only site I know of that does that).

Except for intramuscularly injected supplements (B-12, magnesium, Myer’s Cocktail) there’s no information on supplements but this book is a gold mine for information on the over 250 pharmaceutical treatments used in ME/CFS. Not every patient wants to dig through or needs information on all the anti-convulsant drugs, for instance, used in ME/CFS but if you want to learn about the wide variety of pharmaceutical treatments available for CFS -and the options your physician might have missed – this is the book. Five stars.

Buy the book on the Broken Marionette website or on
Check out a review by the Patient Advocate
Maija’s personal website

Hope and Help For Chronic Fatigue Syndrome and Fibromyalgia by Alison Bested (MD) and Alan Logan (ND), 2nd ed., 2008

This is a book with it’s feet on the ground.  With the title “Hope and Help” for this disease –  this book offers help, not a cure, and hope – if you follow its recommendations –  for better times to come.  As it goes about doing this it provides one of the more evenly balanced overviews of chronic fatigue syndrome treatment I’ve come across.

Dr. Logan is a naturopathic physician who’s been extensively trained in the nutritional/alternative approach to disease but he’s objective enough to note that of the more than two hundred supplements touted for this disease that in his experience is that ‘only a handful may really help’.  We get his take on all the biggies: antioxidants (take synergistic formulations), fatty acids (give them a try), melatonin (use under a doctor’s supervision), rhodiola rosacea (exciting botanical!), etc….

Check out the full review here

Recovery From CFS: 50 Personal Stories by Alexandra Barton (2008)

Containing fifty recovery stories collected by Alexandra Barton, including her own, “Recovery From CFS” provides hope. Written in the form of an essay by each recovered patient, passionate protrayals of the sometimes mind-bending depths of disability people with CFS can reach are juxtaposed with their startling recovery stories. The heterogeneity of the illness is well demonstrated with patients using a variety of means to recovery.

One thing to note, because most of the stories emanate from the U.K., with its more limited treatment options, a US ME/CFS Recovery Story book might look a bit different.

Whether or not the book has an answer for you, and it very well may not, if you have chronic fatigue syndrome this is a book to put by your bedside to provide hope.

Defeat Chronic Fatigue Syndrome: An Eight Step Protocol by Martha Kilcoyne

A Chronic Fatigue Syndrome (ME/CFS) Patient Returns. Fifteen years ago Martha Kilcoyne had a classic acute onset of chronic fatigue syndrome but she didn’t end up having a classic outcome. After enduring one last horrific push/crash cycle as she tried to bull her way through this disease she and her husband knew what they were doing wasn’t working. Martha was on disability and her husband was trying to raise their two young children mostly by himself. They decided to go back to square one.

Over time, by themselves, this Massachusetts couple ended up producing many of processes that are now used as a matter of course by many chronic fatigue syndrome professionals; staying within and slowly building up ones ‘energy envelope’, maintaining an activity log, focusing on sleep, finding the right physician, etc. As they did so Martha’s health slowly improved and eventually she recovered entirely. Ten years later she returned to explained how she successfully charted her road through chronic fatigue syndrome (ME/CFS).

‘Defeat Chronic Fatigue Syndrome’ is aimed at the ME/CFS patient, it’s short, it’s readable and it focuses on the essentials of managing this disease. This book is not the one to tell you to take X supplement for Y problem – indeed the short chapter on supplements is weakest in the book – or which treatments to try. In some ways that’s the easy stuff; managing ones disease successfully while being encased in brain fog and being torn by guilt and remorse and frustration – that’s the really hard part of ME/CFS and that’s precisely what this book is about.

In ‘Defeat Chronic Fatigue Syndrome’ Martha grapples with the fundamental issues chronic fatigue syndrome patients have to deal with; how do I balance health and responsibility? When should I say stop? What should my priorities be? How should I manage this disease?

Will ‘Defeat Chronic Fatigue Syndrome’ enable you to defeat ME/CFS? That’s probably too much to ask. As severe as Martha’s illness was, she was lucky in some of the ways it manifested itself. What ‘Defeat Chronic Fatigue Syndrome’ will do is acquaint (or reacquaint) ME/CFS patients with the basic do’s and don’t of this disease and give them a strong foundation to proceed forward. It’s practical, hard-earned advice and her message of hope should prove valuable to ME/CFS patients everywhere.  ‘Defeat Chronic Fatigue Syndrome’ is a timely reminder, in our ‘supplement of the month’ world, that sometimes the most effective approaches to disease are the most basic. It’s a worthy addition to any patient’s bookshelf.

Your Symptoms are Real” by Benjamin Natelson, MD (2007)

Dr. Natelson’s second crack at a book on ME/CFS is his best yet. This is not a book for someone who wants to learn about how to fight chronic fatigue syndrome (ME/CFS) using all sorts of alternative therapies. It’s clear Dr. Natelson is not a fan of much of what is promoted as treatment for ME/CFS but if you want a thorough and rigorous look at ME/CFS from and highly compassionate physician/researcher you’ll love this book.

First Natelson takes the reader on a fascinating journey into the difficulties doctors have when they encounter this mysterious disease. Many patients are clearly frustrated with many of their doctors – and here we can see how almost equal amounts of frustration often pile up on the physicians side as well. As Dr. Natelson winds his way through the possible causes and treatments for FM and ME/CFS he carefully explains why he does and does not use embrace one treatment or another.

An engaging writer, he draws us skillfully and painlessly into the complex world of ME/CFS research. A prolific researcher, towards the end of the book we gain some intriguing insights into his latest findings and some new therapies I haven’t seen discussed before. Dr. Natelson’s views will not fit everyone (not unusual in this field) but this is a thoroughly engaging and above all educational book by one of our foremost researchers and physicians. Highly recommended.

Fibromyalgia and Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain and More Energy. Fred Friedberg, Ph.D. (2006)

‘7 Proven Steps to Less Pain and More Energy’ doesn’t promise what most CFS patients understandably want – a cure. In fact Dr. Friedberg believes that the need for a cure (when one isn’t present) and the demand to be well (when that probably isn’t possible) only makes things worse and possibly, given the nature of this disease, much worse.

Dr. Friedberg is not talking off the top of his head; as a long-time chronic fatigue syndrome (ME/CFS) patient himself, he notes he wasted a good deal of time, money and energy struggling against the confines of this disease and that substantial improvements came only when he learned how to interact more skillfully with it. Dr. Friedberg still has ME/CFS but his quality of life and his ability to function are much improved. While he is no longer the long distance runner he once was he can now play vigorous games of volleyball without relapsing.

With no new treatments looming on the horizon Dr Friedberg proposes that the most effective thing patients can do is to learn how to ‘cope’ effectively with this disease. Coping sounds like the kind of palliative term medical professionals trot out when they’ve exhausted everything else; you should learn ‘good coping skills’ as if poor coping skills got you into this mess to begin with.

But Dr. Friedberg means something very different from what’s usually associated with the word. Instead of tinkering around the edges of this disease the program he’s created has the potential to mount a real assault on it. Even if his program doesn’t get you well Dr. Friedberg asserts that the vast majority of patients who do give it a try will feel better and lead fuller and richer lives.

The Seven Steps are not new; they include relaxation strategies, sleep strategies, pacing, identifying negative emotions and getting support and involve doing breathing exercises, making activity logs, doing mindfulness exercises, etc. What’s different about this book is the attention given to each and by the fact they’re presented in a package by a medical professional who’s successfully used them on himself and his patients.

The book is short and easy to read and Dr. Friedberg does an excellent job of explaining each technique and why it’s relevant to ME/CFS. I would have liked a bit more text than Dr. Friedman provides; a deeper exploration of the different meditative techniques, more on the scientific underpinnings of the ‘mindfulness stress reduction’ and worksheets or some sort of ‘action plan’ patients could use to organize their efforts but the book covers the basics.

It’s important to realize that Dr. Friedberg’s behavioral approach is more complementary to the march of research than adversarial to it. If the stress response is out of whack, as an increasing amount of research suggests, and the post-exertional malaise in the disease implies, then Dr. Friedberg’s recommendations to engage in activities that can help to rebalance it only make sense.

In the modern ‘take a pill’ and see me tomorrow era of medicine Dr. Friedberg’s program stands out in its emphasis on lifestyle management. It’s not sexy and it doesn’t provide the ‘big’ answer that will make ME/CFS go away tomorrow but it may very well provide the most good for the most people at this juncture.

From Fatigued to Fantastic!: A Proven Program to Regain Vibrant Health, Based on a New Scientific Study Showing Effective Treatment for Chronic Fatigue and Fibromyalgia by Jacob Teitelbaum (Paperback – 2007)

The Encyclopedia – Written by one of the most prominent chronic fatigue syndrome (ME/CFS) physicians this fine book offers, despite its overwrought title, an engaging and easily accessible overview of the complex world of CFS treatment. Dr. Teitlebaum is the only physician associated to have subjected his treatment protocol to the vicissitudes of a peer reviewed double-blinded study. Throughout the book he spices the mix with insightful comments on virtually every treatment.

Dr. Teitelbaum appears to have tried every approach under the sun and they all seem to be covered in this rather hefty volume. Besides the usual treatment sections on sleep, fatigue, pain, etc. there are chapters on Finding a Physician, two appendices that spell out Dr. Teitelbaum’s treatment protocol for patients and for physicians, an complete resources section, a support group section, a disability section and more.

Where Fatigued to Fantastic really shines, though, is in Dr. Teitelbaum’s personal insights into what does and doesn’t work in ME/CFS. Dr. Teitelbaum doesn’t just give lists of drugs or treatments; he states what each treatment does, why he thinks it may work and what his experiences have been with it.

Ironically one of the books strongest points – it comprehensiveness and detail may seem daunting at first to the brain addled chronic fatigue syndrome (ME/CFS) patients. But the book is clearly organized and Dr. Teitelbaum bows to none in his communication skills. One would think almost any patient would find something of value here.

Dr. Teitelbaum’s approach may not be for everyone; his doctor’s satchel contains everything from newest alternative approaches to most traditional pharmaceutical ones. He’s an aggressive physician – sometimes going where others may not. He advocates, for instance, the use of (bio-identical) hormone supplementation even when laboratory tests are negative and in his efforts to get his patients to sleep better – the most essential problem in chronic fatigue syndrome (ME/CFS) he believes – instead of one or two sleep medications he will prescribe up to six – all in small quantities – at once.

Whether Dr. Teitelbaum’s approach is the most effective or not, From Fatigued to Fantastic is easily the most comprehensive, well thought out and informative guide to chronic fatigue syndrome (ME/CFS) found today.

A Patients Guide to Chronic Fatigue Syndrome and Fibromyalgia by Bruce Campbell (2008)

Bruce Campbell’s ‘Patient’s Guide’ is the best day-to-day management resource for ME/CFS available. Bruce Campbell recovered fully using the management techniques present in this book and while few will be so lucky it’s hard to imagine that most would not be helped significantly by the tools found in this book. Indeed Dr. Lapp, who Campbell has partnered with to produce his self-help courses, reports “I have encouraged virtually all of my patients to read this book and follow Campbell’s advice. This book offers hope to those with Chronic Fatigue Syndrome and fibromyalgia.”

Campbell’s approach is the antithesis of sexy; it requires careful monitoring,  provides strategies for such exciting practices as pacing, ways for controlling stress and managing emotions, has tips on how to exercise effectively, deals with relationship issues, etc.  In a disorder with a tweaked out stress response system – this book, even it doesn’t provide a cure, hits alot of the right notes. Check out Campbell’s CFIDS Self Help site for online programs that do the same.

Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide

A classic in the field, this book is getting a bit long in the tooth (2001) but still does what it does – provide overviews of symptoms, diagnosis, research and treatment – better than any other. Written by a psychologist, Katrina Berne, with a severe case of CFS who has contributed to the ME/CFS community on many levels.

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