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Books with some good bits but... 
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The Books with some good bits but... section includes:
- Treatment of Chronic Fatigue Syndrome in the Antiviral Revolution Era, Concise Encyclopedia of Chronic Fatigue Syndrome, Chronic Fatigue Syndrome and the Body's Immune Defense System, and Chronic Fatigue Syndrome, Genes, and Infection: The Eta-1/Op Paradigm by Roberto Patarca-Montero
- Running on Empty by Katrina Berne, Ph.D.
- CFS, Fibromyalgia and other invisible chronic illnesses, by Katrina Berne, Ph.D.
- Chronic Fatigue Syndrome, by Gregg Charles Fisher
- A helping hand through ME by Janet Hurrel
- Adolescence and ME/CFS: Journeys with the Dragon by N. E. Brotherston.
- Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome by Dorothy Wall
- Betrayal by the Brain by Jay A. Goldstein
(Note that not all of these books have been reviewed yet, merely categorised)
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Books by Roberto Patarca-Montero
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Treatment of Chronic Fatigue Syndrome in the Antiviral Revolution Era, Concise Encyclopedia of Chronic Fatigue Syndrome, Chronic Fatigue Syndrome and the Body's Immune Defense System, Chronic Fatigue Syndrome, Genes, and Infection: The Eta-1/Op Paradigm by Roberto Patarca-Montero
These books do contain some good information on M.E. However, they also contain a vast amount of information on patients with chronic fatigue, and those with all the different illnesses which are often misdiagnosed with CFS.
The real problem however is that no distinction AT ALL is really made between these patient groups. Studies on patients with fatigue are assumed to be entirely relevant and useful to patients who have ME, or who qualify for a diagnosis of CFS (a diagnosis that may mean almost anything). Even studies on cancer patients who are suffering 'fatigue' are included and assumed by the author to be directly relevant to everyone with ME and CFS and fatigue.
This is a bizarre mix of studies relating to a very wide variety of patient groups all in one book and discussed as if they all related to one distinct disease category - which is clearly impossible. The author seems to see nothing wrong with this approach despite all the glaring inconsistencies that are so very obvious to anyone with even a basic education. It really is baffling and so illogical, this approach. This bizarre and unscientific approach makes a mockery of logic or of proper diagnosis.... It is profoundly flawed.
Professor Malcolm Hooper recommended these books, which is why I bought them, but I do not understand why he did so. I can't see how they are any value and indeed they could so easily do a lot of harm. (As I recall, some of the psychological theories of 'CFS' are supported in these books, as if the confusing of ME with mere 'fatigue' weren't enough). The author clearly means well and is trying to help, but it is hard to see how these books are anything but a hindrance, to sufferers of ME, CFS or fatigue and to doctors who treat these patients.
Rating: These books are not useful for the average sufferers, or for doctors who want to get an overview of M.E. and who are not already aware of the basics. This book would only confuse those not already familiar with the basic facts of M.E. I would not recommend this book to anyone, despite the fact it does actually contain some good information on the illness (if you know where to look for it, and what to ignore and avoid on the way!)
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Running on Empty
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Running on Empty by Katrina Berne, Ph.D.
This book review is coming soon.
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CFS, Fibromyalgia and other invisible...
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CFS, Fibromyalgia and other invisible chronic illnesses, by Katrina Berne, Ph.D.
This book review is coming soon.
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Chronic Fatigue Syndrome
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Chronic Fatigue Syndrome, by Gregg Charles Fisher.
This book review is coming soon.
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A Helping Hand Through ME
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A Helping Hand Through ME by Janet Hurrell
"It took me literally years to work out that much of what I was doing to fight my disease was useless. And that some of what I had been doing was actually prolonging the condition. That is why I wrote this book"
Comments: This book has some great points to make about how what we do can affect the course of our illness in a positive way - things like our diet, how much we rest and how we deal with stress and Hurrell has some great ideas on how to manage all these things. Various treatments are also mentioned, all of them heavily on the side of alternative medicine and solidly anti-pharmaceutical. As Hurrell writes "they didn’t work for me and so I think they are not suited to ME" and that’s really the biggest problem with this book, it’s lack of objectivity.
Lots of assumptions are made that the readers case will have everything in common with the authors which just can’t work. Information on many of the natural therapies are also followed with things like "it may not work for everyone, but for two people I know they were virtually recovered in a year after using it" sort of comments, wildly spreading all sorts of false hope with completely unproven treatments (including magnetic therapy). She’s also very heavily pro-CBT even mentioning one case where someone went from bedbound to being able to go for short walks after just 2 weeks of therapy. It’s all very anecdotal and based on the authors own individual experiences.
Bits of it are really fantastic though, the rest and diet bits are really great but the rest of it isn’t anywhere near as good unfortunately.
Readability: High, Hurrell has a really natural style of writing that is very easy and enjoyable to read.
Any stupid bits? Much of the medical information given is simply outdated; CFS and chronic fatigue are used interchangeably, problems dealing with psychological stress seem to be assumed in all cases and recovery rates are extremely overstated with comments like ‘the vast majority of sufferers go on to lead fairly normal lives.’
Mentions of the severely affected: A few mentions of people being bedbound but that’s about it and the point is made repeatedly that this severe stage of the illness shouldn’t last that long. A few times it mentions recovery from the initial severe stages ocuring in weeks or months. There’s no real mention of deaths or even of severe symptoms.
Rating: This book has some really good bits on resting, diet, and the role that we can play in giving our bodies the best possible chance to recover, but it does have lots of inaccurate bits as well.
Quote: "Your energy is a valuable commodity to be used with great care. If you have nothing in the bank and take your credit card for a shopping spree, you are spending money you can’t afford and will end up in real trouble. […] You may find that, when you get absorbed with or excited about an activity you are involved in, the excitement and adrenaline can keep you going artificially, when your real energy is, in fact, used up" |
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Adolescence and ME
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Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon by Naida Edgar Brotherston
"Examines the true-life experiences with four young women stricken with this chronic illness and offers advice and support for sufferers, their families and their friends. This book focuses on how these women cope with this stigmatizing chronic illness during adolescence and the impact it has on their lives. Here is a personal "Guide to Survival" for adolescent patients and parents, and a window into the psychosocial implications of this illness for those in the helping professions"
Comments: I wouldn’t call this a survival guide, it doesn’t really tell you how to cope, it just explains in the past tense how 4 young women coped with their individual situations. What is bizarre is that not only are there only 4 case studies, but all 4 are almost exactly the same!! They all share a similar mild-moderate illness level, an educated middle class background and were all diagnosed very early into their illnesses. (They could all also be described as ‘achievers’ before they became ill which seems to be needlessly playing into the old ideas about type A personalities too). There is absolutely no advice or extra information on how things might be for people not in any of these categories, which would be most people I would think in one way or another. It’s extremely specific and anything but a balanced view. But for all that, it described extremely well the strength of mind that coping with ME/CFS with so little help leaves you with and all the stages you have to go through to get there, as well as how one person in the family having ME/CFS changes the whole dynamic, so that made it worth reading for me.
Readability: I found this one pretty hard going.
Any stupid bits? Lots! It goes on and on about how ME/CFS has at least some sort of physiological element to it and that this needs to be given at least equal time with psychological theories(!). Nowadays we know that there is no chance at all that this is a psychological illness and would say that ALL research needs to be into the organic causes of the illness, not just half! All the medical stuff in this book is completely outdated, really really terrible and best ignored altogether. It contradicts itself continually and is quite confused, it’s just awful.
Mentions of the severely affected: Absolutely none at all. There is not one mention that these women got off lightly and that it can be a much more severe illness that just making you have to go part-time at Uni instead of full-time!
Rating: Well worth a read for you and maybe for your family as well if you got ME/CFS in your adolescence (as long as you ignore all the medical bits!)
Quote: "I overwhelm a lot of people I think, because of my fearlessness. Like when you face being so miserable you want to die, when you face living with a chronic illness, when you face losing everything that’s important to you, you just don’t sweat the small stuff . . . So it’s like the kind of courage and intensity that you aproach life [with] because of the strength you have to pull through. It’s something that very few people can understand or relate to."
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Encounters with the Invisible...
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Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome by Dorothy Wall
Read Mary Shweitzer's review of this book
An excerpt: If you are looking for a book that summarizes all the new research and information on the disease, you will not find it here - better off following the co-cure website. From that perspective, it is kind of odd to encounter someone so intelligent who has not been one of us, online.
I wish there was more about the half-century of information and advocacy within the M.E. community in Britain, and perhaps more on recent research.
But this is not really a book about research summaries or patient advocacy. It is a book about having this disease. As such, I cannot imagine a more eloquent or honest depiction of what this disease is LIKE. She understands and describes all the bewilderment, denial, confusion, fear, anger, acceptance, frustration, above all, the constant unrelenting presence of the ILLNESS itself that all of us have experienced.
One patient comments: The comment [by Mary Schweitzer] on Dorothy Wall's "Encounters With the Invisable" saying "She gives a ahort and adequate description of the history of the disease in the United States" is not true. In fact, her history is false and distorted. One example is when she reports on one charity in the US meeting at the CDC in the early 90's which is years before that charity even existed!
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Betrayal by the Brain
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Betrayal by the Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders by Jay A. Goldstein
Comments: Dr Byron Hyde, arguably the world's leading M.E. expert, has made a number of very positive comments about the work of Dr Goldstein; in particular his research into the abnormalities seen on brain scans in patients with M.E.
However, this review is not a comment on the overall body of work produced by Dr Goldstein, but merely of this one book. This book review also does not the suitability of this book in general (to doctors or to 'CFS' patients and so on) but only the suitability of this book for people with moderate to severe M.E.
Despite any other contributions made to M.E. research by Dr Goldstein I cannot in good conscience recommend this book to anyone with M.E. I found it a complete waste of time and money. Although I have read it several times... much of what he is TRYING to say is still very unclear - it is so badly written.
I'm also very unsure how much of this book related to M.E. and how much was about very different fatiguing disorders. All the references to patients of his being made completely asymptomatic after their first visit and who stayed asymptomatic with just one or two drugs make me extremely skeptical I have to say. That simply would be IMPOSSIBLE if these actually were M.E. patients (unfortunately).
(Incidentally I have tried many of these same drugs he mentions, and so have many, many fellow M.E. sufferers, and none of us had anything like the experiences he describes here. These experiences have also not been replicated in any way by the world's leading M.E. experts; none of whom claim to be able to make M.E. patients asymptomatic with a few simple drugs, or anything remotely similar.)
Also, a large number of case studies are described in detail and the vast majority of them sounded very unlike M.E. Perhaps the clue is in the title? Generally speaking, people that say that Fibromyalgia is a similar illness to M.E. (or M.E. equivalent CFS, or whichever term they use) very seldom have a grasp on what authentic M.E. actually is and the enormous difference between M.E. and 'CFS.'
Perhaps this view changed throughout Goldstein's career? (That must be the case if he is so celebrated for his pioneering work with M.E. brain scans surely?).
Readability: Very poor. Incomprehensible for the most part. Possibly the most badly written book I have ever read.
Any stupid bits? There are many very questionable statements made in this book. I found the claim that 'CFS' can be caused by stress very worrying in particular, although it does make sense if he is not describing patients with authentic M.E. (an illness which cannot be caused by stress).
Again, all the non-M.E. case studies and the very easy 'miracle cures' were a real worry. People with M.E. unfortunately are not so easily made asymptomatic and so it is worrying that people would come away from reading this book with the idea that M.E. is nothing that a few simple drugs couldn't fix, when the reality is of course VERY different. The tone of these 'miracle cures' was also of concern.
In this book when Goldstein uses the term 'CFS' this should not be taken to mean that his comments relate to people with M.E.
Mentions of the severely affected: None. The patients described are moderately affected at worst.
Rating: Not recommended. However, if you would like to read some of the work by Dr Goldstein (as well as M.E. experts such as Hyde, Dowsett, Ramsay and Richardson), I would recommend that you purchase: The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde, M.D. This book is far more useful for doctors and patients alike.
I would hate for anyone else with M.E. to waste their money on this book like I did. (But again, this is not necessarily a comment on the quality of other works and research on M.E. produced by this author.)
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More Book Reviews...
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