The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Books with some good parts but also some problematic parts

The Books with some good parts but also some problematic parts section includes:

 

(Note that not all of these books have been reviewed yet, merely categorised)

Before reading the research/advocacy information given in the book reviews and books on this page, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

The Doctor's Guide to CFS and The Disease of a Thousand Names and A Parents Guide to CFIDS and Faces of CFS by David S. Bell MD

The Doctor’s Guide to CFS: Understanding, Treating and Living with CFIDS by David S Bell MD

"David S Bell MD, a noted expert and pioneer in the diagnosis and treatment of CFIDS, has written this book to provide accurate, up-to-date, and accessible information for all those who need to understand this emerging health epidemic. The definitive guide to the history, symptoms, effects, theories, treatment, continuing research, and recent advances covers all that anyone who has been touched by this devastating illness needs to know to understand, treat and live with it."

This book contains a mix of information about M.E. and about 'CFS.'

That is very problematic but even so parts of the book could be considered useful reading to some extent for patients with M.E. (The books by Dr Hyde are far superior however, in every way. I can't express how much!)

But right at the end he writes "In regard to CFIDS, the need is simple. It is not billions of dollars for medical research, for those billions have more urgent needs; CFIDS is a horrible illness, but it is not as dangerous as AIDS or cancer."

What a shame to include such an ignorant and dismissive statement in such a book. It shows his appalling ignorance of genuine M.E. and most especially severe M.E. which leaves many patients far more disabled than AIDS patients (and with far less support, making it even worse in soem ways).

This book may in part be about M.E. but only the most mild or maybe moderate cases. The previous statement does kind of back up the idea he may not have seen too many OR ANY really severe patients in his time though perhaps.

This may be a controversial statement, but in some ways Bell very much seems be getting further and further away from describing and discussing pure neurological M.E. as time goes on. More and more his work is muddied by 'fatigue' and by the bogus definitions of 'CFS' and does not relate to actual pure neurological M.E. whatsoever these days.

This book is good in parts, very bad in others. Politically it is terrible.

What patients need to know politically is that:

-----

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.

-----

Quote: "While patients suffering the despair of CFIDS may disagree, I do not feel that CFIDS is our greatest enemy. Our enemy is the apathy that has allowed CFIDS to go unrecognized, the same apathy that has allowed our society to fall to the present dangerous level"


The Disease of a Thousand Names by David S Bell MD

Slightly better than the book listed above. But all the above comments also apply.

Quote: "It is ironic that in this day of specialists, the generalists have been the only group of physicians able to recognize the spectrum of symptoms in CFIDS as a specific syndrome. But in our era of technology, it is rare for specialists to listen to generalists."


A Parents Guide to CFIDS by David S. Bell MD.

The same comments apply as to the books listed above. May be worth buying of you have a child with M.E. so long as you ignore the political and medical information.


Faces of CFS by David S. Bell MD.

A free copy of the book in ebook format has just become available at this website

This book contains a mix of information about M.E. and about 'CFS.'

Only a very tiny part even possibly relates to M.E.

Mixing the two is very problematic but even so parts of the book could be considered useful reading to some extent for patients with M.E. (The books by Dr Hyde are far superior however, in every way.)

This book looks at a small number of case studies of the illness, all patients of Dr Bell. There is some interesting information here, and also much which is irrelevant and also a small amount which is quite disturbing (concerning exercise, as I recall).

Anyone that can talk up exercise to help those diagnosed with 'CFS' is part of the problem not the solution, sadly.

This was an interesting read, but didn't really add much to my state of knowledge. The most interesting topic was the idea of blood transfusions maybe helping patients with reduced circulating blood volume. If you can read it for free online, it may be worth your time but otherwise I couldn't recommend it.

I also would not choose this book to give to a family member or doctor to explain about M.E. as much of the general information given is muddied by 'fatigue' and CFS. It does not provide a good overview or a good discussion of the history of M.E. (as the title would suggest), and there are some very worrying statements made in the book you would not want to expose nasty 'disbelievers' to! Statements which could lead to serious abuse.

This book may in part be about M.E. but only the most mild or maybe moderate cases. Dr Bell seems unaware of what severe M.E. is like.

This may be a controversial statement, but in some ways Bell very much seems be getting further and further away from describing and discussing pure neurological M.E. as time goes on. More and more his work is muddied by 'fatigue' and by the bogus definitions of 'CFS' and does not relate to actual pure neurological M.E. whatsoever these days. When he says 'CFS' he should now refer solely to 'chronic fatigue'as this is what he is discussing. No distinct disease at all, including M.E.

This book is good in parts, very bad in others. Politically it is terrible.

What patients need to know politically is that:

-----

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.

ME/CFS: Clinical Working Case Definition by Carruthers et al.

For infomation on the benefits and limitations of the guidelines (and where copies of the guidelines may be viewed/obtained) see the full-length Clinical Working Case Definition Review 

This text is available from Amazon.

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 P

The books:

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

... 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 the different 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 M.E. or even fatigue patients, and to doctors who treat these patients.

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 to some extent POSSIBLY (if you know where to look for it, and what to ignore and avoid on the way!)

What patients really need to know is:

-----

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.

Running on Empty and CFS, Fibromyalgia and other invisible chronic illnesses, by Katrina Berne, Ph.D.

Running on Empty by Katrina Berne, Ph.D.

This book means well, the author clearly means well, but this book reinforces all the misinformation spread about 'CFS' and M.E. by people like the CDC and the big 'ME/CFS' and 'CFIDS' groups.

Almost all of the medical information here is outdated, incorrect and irrelevant to those with actual M.E. Every now and then desciptions of symptoms related to M.E. to some extent but that was about it. 98% of the information in this book was about 'CFS.' (I make no comment on which the author suffered with.)

The poor quality information in this book was a real lost opportunity to do some good.

This is one of the first books I got after becoming ill with M.E. and it is partly responsible for my remaining ignorant of the basic facts or the disease for so long, and also played a role in the illness severely worsening over time.

This type of misinformation and lack of political awareness is also a big part of why we have made so very little progress over the last 20 years. I don't understand why some patients still recommend this book to fellow M.E. patients. It's hugely problematic. This is not a book on M.E.!

What this book should have said is:

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.

For more information on genuine M.E. read books and articles by genuine M.E. experts such as Dr Hyde and Dr Dowsett. This book should be avoided by M.E. patients and the 'CFS' misdiagnosed non-M.E. patient alike. None of us need the facts muddied even further, this only makes it harder for us all to start slowly getting well.

I give this book 2 stars instead of one as the author clearly means well and is motivated to help people. If only the content of the book had lived up to the authors strong desire to help.


CFS, Fibromyalgia and other invisible chronic illnesses, by Katrina Berne, Ph.D.

This book means well, the author clearly means well, but this book reinforces all the misinformation spread about 'CFS' and M.E. by people like the CDC and the big 'ME/CFS' and 'CFIDS' groups.

Like her first book, this book does not distinguish adequately, or at all, between fatiguing illnesses and M.E. or 'CFS.' Ridiculous and unscientific claims are also made about Fibromyalgia being basically the same as 'CFS.' This book also very clearly means well, but is not a good source of reliable medical information.

The poor quality information in this book was a real lost opportunity to do some good.

This type of misinformation and lack of political awareness is a big part of why we have made so very little progress over the last 20 years. I don't understand why some patients still recommend this book to fellow M.E. patients. It's hugely problematic.

Anyone who can't see the huge difference betwen FM and M.E. and between the definitions of 'CFS' and M.E. - clearly does not understand even the most basic facts about M.E., with respect.

What this book should have said is:

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.

For more information on genuine M.E. read books and articles by genuine M.E. experts such as Dr Hyde and Dr Dowsett. This book should be avoided by M.E. patients and the 'CFS' misdiagnosed non-M.E. patient alike. None of us need the facts muddied even further, this only makes it harder for us all to start slowly getting well.

I give this book 2 stars instead of one as the author clearly means well and is motivated to help people. If only the content of the book had lived up to the authors strong desire to help.

Chronic Fatigue Syndrome, by Gregg Charles Fisher

This book means well, the author clearly means well, but this book reinforces all the misinformation spread about 'CFS' by people like the CDC etc. Almost all of the medical information here is outdated, incorrect and irrelevant to those with actual M.E. Some desciptions of symptoms (including the author's) related to M.E. but that was about it. Most of the information was about 'CFS' and almost all of the medical information given was about 'CFS.'

The poor quality information in this book was a real lost opportunity to do some good. This type of misinformation and lack of political awareness is a big part of why we have made so very little progress over the last 20 years. I don't understand why some patients still recommend this book to fellow M.E. patients. It's hugely problematic. It is so outdated, and so propaganda supporting.

Not recommended, unless perhaps you just read the comments on coping (and ignore all the medical information) which are quite good in some places.

A helping hand through ME by Janet Hurrel

"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 with M.E., 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.’

This statement is blatantly false when it comes to M.E. Many with fatigue illness may recover however.

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. Some are appalling and could cause great harm.

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"

Adolescence and ME/CFS: Journeys with the Dragon by N. E. 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"

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 (if it was M.E. thay had, this seems far from clear and even far from lkely in all cases) 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 changes the whole dynamic, so that made it worth reading for me.

I found this one pretty hard going.

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 M.E. 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. It mixes M.E. and 'CFS' horribly.

Mentions of the severely affected in this book are zero. There is not one mention that these women got off lightly with regards to M.E. 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! This is almost certainly a book about 'CFS' and not M.E. at all.

What you really need to know is:

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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: "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."

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! 

Betrayal by the Brain 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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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95