Customer Reviews

Chronic Fatigue Syndrome Treatment: A Treatment Guide (Quality Medical Home Health Library)

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If you buy just one book on CFIDS, make it this one. The authors cover just about every CFIDS symptom imaginable along with suggested treatments and the treatments' pros and cons. Added bonuses include a cataloging of medications and natural remedies used to treat CFIDS with notes on possible side effects. I found discussions of even my wackiest symptoms, those I thought no one could ever possibly understand (including the "sensory storm" which a previous reviewer mentions). The authors are CFIDS sufferers themselves, so reading the book is like talking to an extra-knowledgeable and empathetic friend. As a previous reviewer mentioned, this impressively researched and thorough book is a great one to bring along to the doctor.

I think that I have read them all and this is one of the better ones. If one cannot adequately desribe what a symptom is like to a health care provider, take this with you. For example the sensory "storm" on page 116 clearly defines in one paragraph a phenoma that the patient and physician can both understand. The pros and cons of each treatment possibility makes one a better informed consumer of health care. If you read this you will know what to expect.

When diagnosed with CFS, I didn't know anything about it. I immediately decided to learn all I could about this syndrome, and this book provided more information than I ever hoped for. The authors truly understand what it is like to have CFS, and absolutely validated my feelings and symptoms. The book offers information about prescription drugs, herbal remedies and vitamins that is thorough and helpful. I am glad to report that I am feeling much better after taking some of the recommended supplements, which are not mentioned in any of the other literature I found on this subject. If you are going to buy one book about CFS, this is the one to get. It's the only one you'll need.

This book has case studies of people with M.E., it details the history of the illness to some extent, has an in-depth discussion of symptoms cross referenced with treatment information, sections on food issues and avoiding chemicals in the home, sections on pharmaceuticals as well as other treatments from acupuncture to vitamins, tips on coping with M.E. emotionally and so on.

The authors are both long-term sufferers and they say they tried to make this book the resource they wish they'd had years ago.

You can look up a particular symptom and read what causes it and what treatments may help with it or look at individual treatments. A wide variety of prescription pharmaceutical drugs are included, but so are vitamins, herb and so on. More than a hundred different treatments are featured.

I bought this book in 2003 or so and I used to refer back to this book when I got a new symptom or a new medication. I haven't done so in some time however as I feel that this book is now very outdated in regards to the medical advice it gives. I've done a lot of reading about M.E. treatment in the last few years and I have learned that actially a lot of the information given in this book is misleading and very out of date. My health has improved so much with this new reading and I feel like this book's advice could hold people back from improvement.

So, the information on treatments in this book I can no longer recommend at all. What this book does do well is:

1. Describe some of the symptoms and their causes

2. Provide adice on diet

3. Provide advice on coping emotionally

Unfortunately, as with every M.E. book that uses the term 'CFS' some parts of this book are about 'CFS' rather than M.E. About 70% is about M.E., and 30% is related to 'CFS' and incorrect as regards M.E.

It does has a really great bit about how we need to stop talking about `fatigue' though.

There are also no mentions of severely affected patients at all which really lets this book down. It's an enormous omission.

This book may or may not be useful to you in some way if you have M.E. But make sure you know the basics of M.E. first so you know which bits to ignore as relating only to 'fatigue' or 'CFS.'

You need to know:
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M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.

The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.

Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.

Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.

The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.

Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.

The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.

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Quote: {The term ME has been inserted here as what is being talked about is M.E., and not 'CFS.' The terminology is incorrect in this instance.]

"Single-photon emission computed tomographic (SPECT) scans have shown that in patients with [ME] who exercise, brain blood volume is reduced 1 to 3 days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with [ME], exercise also lowers cortisol levels, which makes it more difficult for the body to control inflammation. In addition, it increases erratic breathing and leads to a rapid progression to anaerobic metabolism, which produces ammonia and lactic acid. These negative results are the opposite of what would normally be expected.

In short, a simple answer to the exercise question is, if you are severely or acutely ill, exercise can make matters worse-in some cases, much worse. The time to discuss an exercise program with your physician is when the illness is stabilised and clear signs of recovery are noted.

Dr. Paul Cheney remarks that "patients with this disease must, for many of them for the first time, place limits on their workstyles and lifestyles. Proper limit-setting , which is always individualised, is the key to improvement in this syndrome" (CFIDS Chronicle, March 1991).This comment comes after observation of thousands of patients, many of whom denied their illness for extended periods before adjusting to its limitations. Dr. Cheney has seen not only the successes inherent in making these adjustments, but the failures that resulted from attempting to ignore them. But first, we must address the question of what is meant by "proper limit-setting."

To set proper limits, we must start with a basic awareness of how [ME] affects the body and the [brain]. [ME] affects the ability to maintain homeostasis; that is, once the illness is established, it alters the body's ability to adjust to changes in the environment. For example, a person with [ME] climbs a set of stairs and feels like he or she has just climbed Mount Everest. The out-of-breath, depleted feeling is the result of sluggish heart rate, which, in [ME] does not respond in time to greater demands for oxygen required by exertion. As a result., not enough oxygen is available, and a person with [ME] feels winded after even minimal strain. This type of delayed reaction also results from temperature changes. People with [ME] often remark that when they become cold, "it takes forever to warm up." The same is true for heat. Both temperature extremes produce symptoms as the body attempts to adjust.

People with [ME] often comment that they are either "on" or "off." Once they stop, they can't get going again; and once they start, they can't stop. In the Clinical and Scientific Basis of ME /CFS, Dr. Byron Hyde, a well-known clinician and researcher of myalgic encephalomyelitis (ME) describes taking a walk with one of his patients. Dr. Hyde noticed when he stopped to look in a store window, his companion kept going. When asked why, Dr. Hyde's companion replied that if he stopped, he would never get going again!

Once embarking on a project, a task, or a plan, it is difficult to stop. Even when performing easy activities such as taking a walk or balancing a chequebook, patients with [ME] often pas the point of endurance, and symptoms rapidly develop as a result.

Learning when we are "overdoing" it is how we define our own particular limits. This takes awareness, skill, and practice. Each person has limits that are defined by the severity of the illness. For a person who is bedbound, limits will be very different from those of someone who is able to work. Patients who are bedbound may find that extended telephone conversations, standing in the shower, or tackling stressful tasks such as filling out disability application forms produce exhaustion and a general exacerbation of symptoms. These patients may find that sitting in a plastic chair while showering, limiting conversations to 10 minutes, and resting before and after doing necessary paperwork [may help]. A patient who is mildly Ill and able to work may wish to cut back on work hours, take naps, and forgo activities that place excessive or inflexible demands on the body (such as team sports or other activities that do not allow the participant to "listen": to the body).

A former airline pilot refers to limit setting as living in a box. " As long as I'm in the box, I do alright. If I cross the margins of this box, I don't do very well" (CFIDS Chronicle, March 1991). Defining the limits of your own particular box is the key to developing good coping strategies. Whatever produces a symptom on any particular day or at any particular hour is where you would define your limits, not by any abstract assessment of what you think you should be doing or a comparison with former capacities."

Jodi Bassett, The Hummingbirds' Foundation for Myalgic Encephalomyelitis

If you buy just one book on CFIDS, make it this one. The authors cover just about every CFIDS symptom imaginable along with suggested treatments and the treatments' pros and cons. Added bonuses include a cataloging of medications and natural remedies used to treat CFIDS with notes on possible side effects. I found discussions of even my wackiest symptoms, those I thought no one could ever possibly understand (including the "sensory storm" which a previous reviewer mentions). The authors are CFIDS sufferers themselves, so reading the book is like talking to an extra-knowledgeable and empathetic friend. As a previous reviewer mentioned, this impressively researched and thorough book is a great one to bring along to the doctor.

This book is one of the most highly informative books. If more patients read it, we would be fielding fewer questions! Gail Kansky President, National CFIDS Foundation, Inc.

This book is great and should be part of your CFS library. However, it was published in 1998, a new edition needs to come with upated information. There is plenty of revised and new information that has occured with CFS in the last 7 years.

My doctor recommended this book to me to better understand my chronic illness. (he even carries a copy with him.) It turned out to be the best book money I ever spent. It is the best overall informative and understandable book about CFS that I have added to my collection in the five years since my diagnosis. It is a must for those individuals trying to learn more about what is happening to their bodies and coping techniques to deal with this chronic and debilitationg disease.

This is a detailed, concise guide to CFS. Very useful in explaining all of the symptoms, and includes both pharmaceutical and herbal treatments. If you believe you are suffering from chronic fatigue, this book will answer the questions you have.

This book was too long and I just got tired of it all after awhile. Where is it going? What can it do for me? Why am I reading this? I just got so exhausted with it that I had to give up. It's 400 pages after all -- 400! Talk about fatigue!