What do you think?
Rate this book
M. E.: Chronic Fatigue Syndrome: A Practical Guide
The author has suffered from M.E. for over 10 years, but has learned how to recover from it. In this guide to the disease, she gives advice exercise, rest and relaxation; nutrition and supplements; coping with a change in lifestyle; managing depression; and M.E. and women.
- GenresNonfictionHealth
Paperback
First published August 1, 2009
2 people are currently reading
9 people want to read
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 3 of 3 reviews
March 10, 2012
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 book is an utter contradiction. It is full of a small amount of good comments and research about ME, but it also strongly reinforces some of the most damaging stereotypes and myths about the illness put about by vested interest groups and psychologisers. This combination makes it extremely dangerous in my opinion - the good information giving the bad information so much more weight and authority as it does. There is enough information here to make the average M.E. patient (a non-well read one at least) think this is a real M.E. book, but the fcats given do not fit M.E. when it comes to the all important medical facts or treatment advice.
Along with lots of great information about Ramsay, and enterovirus links and outbreaks is the not very subtle and constant underlying message that ME is an illness which occurs when type-A personality types get stressed or overwork themselves and that the best way to become well again is to fight those type-A personality traits and of course the accompanying depression and anxiety problems and all will be well - just as it was for the author perhaps? It places much of the blame for any lack of recovery of the illness as well as the getting of the illness itself on psychological factors above all else. As if the ill person is totally to blame for and totally in control of what happens with their illness.
This idea reinforces the all too common but extremely unfortunate phenomenon of patients who have recovered preferring to think that they have caused their own remissions and that those who remain ill have somehow `not tried as hard as they have' to improve and so `deserve' to remain very ill (an `if they wont help themselves why should I help them' idea). It does our activism efforts so much harm (not to mention the emotional harm it causes).
The figures given for recovery levels are also ridiculously high and over-inflated, although this may owe more to the fact this book is quite dated more than anything else.
Macintyre also disturbingly uses some of the same tools as those who would label ME as psychiatric; talking about how Myalgic Encephalopathy is a much more correct term than Myalgic Encephalomyelitis (with no discussion at all of the WHO listing of itis and not opathy and how important this is) and that old chestnut about how the cause of ME is likely to be multi-factorial, with genetics, lifestyle and psychological factors all playing a part. She then goes on to postulate that stress is likely to be one of the things which can cause ME (not trigger but actually CAUSE the illness.)
Macintyre also alarmingly comments that `disturbed family dynamics' may prolong ME in a child, and that with ME there are no visible signs of illness(!).... The list of dangerous and inaccurate comments goes on an on unfortunately.
Many of her ideas seem straight out of the mouths of psychiatrists of the Wessely School and this includes a strong focus on CBT and GET as well. The downsides and limitations of both treatments are discussed as well, (one of many contradictions) but the terrifying dangers of too much bed-rest and of `deconditioning' are painted far more vividly. Almost all of the treatment ideas given are for psychological or exercise related regimes.
Another contradiction is the way the illness is described, she details quite well how the `fatigue' of ME is unlike any normal type of fatigue and how it is more a post-exertional muscle weakness....but then she goes on in other chapters to compare the fatigue of ME to being indistinguishable from the fatigue of Lyme disease or even depression. There are so many such contradictions in this book, it's like it is trying to play both sides.
Macintyre also includes long propagandaist quotes about how ME is psychological from `scientists' such as Dr Michael Sharpe without adequately explaining the context of such quotes or the flaws in their methodology in anything but the most mild way and even spends a considerable amount of time making excuses for and justifying how such opinions may have been `understandably' arrived at. The message is that these scientists have just made understandable `mistakes' (if that) rather than the truth which is that they have set out from the onset to `prove' ME psychological by conflating it with that very different entity of 'CFS' for their own vested interests. No distinction is made between the comments made by esteemed ME specialists those of the discredited Wessely school. Uninformed and biased opinions are given just as much respect and weight as educated ones, leaving the uninitiated reader quite an erroneous picture of true ME Research and understanding.
All of this and so much more is why this book is just so dangerous. Sure it has a few good bits but so do many other books that aren't accompanied by constant messages of blaming the victim and backing up the opinions of the very vested interest group spokespeople that are causing us so much harm.
Mentions of the severely affected in this book amount to a few lines, but also disturbingly include one account of a child described as having `severe' ME who was not in fact anywhere near as ill as some severely ill children can be; and another account of one severely ill woman who Macintyre describes as having `psychological problems' which were maintaining her illness severity and who improved considerably after a course of psychological and GET rehabilitation. There is very much the idea that ME is not that severe and also that if a person is severely ill for a long period of time that it is due to either psychological factors or a patient not managing the illness as well as they might, it is very much about blaming the patient for being severely ill which is obviously very disturbing, and blatantly false.
ME is presented as an illness that most people recover from and the message is constantly that if you haven't recovered, you must be doing something wrong or you must have perpetuating psychological factors preventing improvement - not an overly helpful idea and not one based in fact either. This book could be extremely damaging for anyone severely ill, implying that those who have improved - like the author - have done so through their own hard work and effort rather than by dumb luck, which is almost always the case.
The book also says that patients should never remain bedbound for more than a few weeks or they risk `dangerous deconditioning'...it is just very obvious that Macintyre has no real concept of what severe ME is even about even remotely unfortunately.
She ends the book by saying that `even if we ONLY have 50% of our former abilities, we must still try to do the best with what we have' .....the reality is that most people with ME would never complain about anything in life again if we could get even anywhere NEAR 50% of functioning!!
Come to that, many of us would do anything for a steady 10 or 20%! It's one of so many amazingly insensitive and ignorant and `out of touch with the realities of ME' comments in my opinion. This is illustrated again by the following quote, (as if a relapsing and remitting pattern of illness severity is NOT a hallmark feature of the illness. No, this too she blames on our `personalities' - never let the facts stand in the way of a 'good' theory!)
Quote: `Most ME sufferers relapse because they are active by nature'
The bottom line is that this is a book about 'CFS' which just had a few M.E. facts added as window dressing. Don't be fooled by the way the terminology is used wrongly as the veneer of M.E. is wafer thin and this is about the bogus disease category of 'CFS' to the core.
To be clear, 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.
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.
Jodi Bassett, The Hummingbirds' Foundation for M.E.
This book is an utter contradiction. It is full of a small amount of good comments and research about ME, but it also strongly reinforces some of the most damaging stereotypes and myths about the illness put about by vested interest groups and psychologisers. This combination makes it extremely dangerous in my opinion - the good information giving the bad information so much more weight and authority as it does. There is enough information here to make the average M.E. patient (a non-well read one at least) think this is a real M.E. book, but the fcats given do not fit M.E. when it comes to the all important medical facts or treatment advice.
Along with lots of great information about Ramsay, and enterovirus links and outbreaks is the not very subtle and constant underlying message that ME is an illness which occurs when type-A personality types get stressed or overwork themselves and that the best way to become well again is to fight those type-A personality traits and of course the accompanying depression and anxiety problems and all will be well - just as it was for the author perhaps? It places much of the blame for any lack of recovery of the illness as well as the getting of the illness itself on psychological factors above all else. As if the ill person is totally to blame for and totally in control of what happens with their illness.
This idea reinforces the all too common but extremely unfortunate phenomenon of patients who have recovered preferring to think that they have caused their own remissions and that those who remain ill have somehow `not tried as hard as they have' to improve and so `deserve' to remain very ill (an `if they wont help themselves why should I help them' idea). It does our activism efforts so much harm (not to mention the emotional harm it causes).
The figures given for recovery levels are also ridiculously high and over-inflated, although this may owe more to the fact this book is quite dated more than anything else.
Macintyre also disturbingly uses some of the same tools as those who would label ME as psychiatric; talking about how Myalgic Encephalopathy is a much more correct term than Myalgic Encephalomyelitis (with no discussion at all of the WHO listing of itis and not opathy and how important this is) and that old chestnut about how the cause of ME is likely to be multi-factorial, with genetics, lifestyle and psychological factors all playing a part. She then goes on to postulate that stress is likely to be one of the things which can cause ME (not trigger but actually CAUSE the illness.)
Macintyre also alarmingly comments that `disturbed family dynamics' may prolong ME in a child, and that with ME there are no visible signs of illness(!).... The list of dangerous and inaccurate comments goes on an on unfortunately.
Many of her ideas seem straight out of the mouths of psychiatrists of the Wessely School and this includes a strong focus on CBT and GET as well. The downsides and limitations of both treatments are discussed as well, (one of many contradictions) but the terrifying dangers of too much bed-rest and of `deconditioning' are painted far more vividly. Almost all of the treatment ideas given are for psychological or exercise related regimes.
Another contradiction is the way the illness is described, she details quite well how the `fatigue' of ME is unlike any normal type of fatigue and how it is more a post-exertional muscle weakness....but then she goes on in other chapters to compare the fatigue of ME to being indistinguishable from the fatigue of Lyme disease or even depression. There are so many such contradictions in this book, it's like it is trying to play both sides.
Macintyre also includes long propagandaist quotes about how ME is psychological from `scientists' such as Dr Michael Sharpe without adequately explaining the context of such quotes or the flaws in their methodology in anything but the most mild way and even spends a considerable amount of time making excuses for and justifying how such opinions may have been `understandably' arrived at. The message is that these scientists have just made understandable `mistakes' (if that) rather than the truth which is that they have set out from the onset to `prove' ME psychological by conflating it with that very different entity of 'CFS' for their own vested interests. No distinction is made between the comments made by esteemed ME specialists those of the discredited Wessely school. Uninformed and biased opinions are given just as much respect and weight as educated ones, leaving the uninitiated reader quite an erroneous picture of true ME Research and understanding.
All of this and so much more is why this book is just so dangerous. Sure it has a few good bits but so do many other books that aren't accompanied by constant messages of blaming the victim and backing up the opinions of the very vested interest group spokespeople that are causing us so much harm.
Mentions of the severely affected in this book amount to a few lines, but also disturbingly include one account of a child described as having `severe' ME who was not in fact anywhere near as ill as some severely ill children can be; and another account of one severely ill woman who Macintyre describes as having `psychological problems' which were maintaining her illness severity and who improved considerably after a course of psychological and GET rehabilitation. There is very much the idea that ME is not that severe and also that if a person is severely ill for a long period of time that it is due to either psychological factors or a patient not managing the illness as well as they might, it is very much about blaming the patient for being severely ill which is obviously very disturbing, and blatantly false.
ME is presented as an illness that most people recover from and the message is constantly that if you haven't recovered, you must be doing something wrong or you must have perpetuating psychological factors preventing improvement - not an overly helpful idea and not one based in fact either. This book could be extremely damaging for anyone severely ill, implying that those who have improved - like the author - have done so through their own hard work and effort rather than by dumb luck, which is almost always the case.
The book also says that patients should never remain bedbound for more than a few weeks or they risk `dangerous deconditioning'...it is just very obvious that Macintyre has no real concept of what severe ME is even about even remotely unfortunately.
She ends the book by saying that `even if we ONLY have 50% of our former abilities, we must still try to do the best with what we have' .....the reality is that most people with ME would never complain about anything in life again if we could get even anywhere NEAR 50% of functioning!!
Come to that, many of us would do anything for a steady 10 or 20%! It's one of so many amazingly insensitive and ignorant and `out of touch with the realities of ME' comments in my opinion. This is illustrated again by the following quote, (as if a relapsing and remitting pattern of illness severity is NOT a hallmark feature of the illness. No, this too she blames on our `personalities' - never let the facts stand in the way of a 'good' theory!)
Quote: `Most ME sufferers relapse because they are active by nature'
The bottom line is that this is a book about 'CFS' which just had a few M.E. facts added as window dressing. Don't be fooled by the way the terminology is used wrongly as the veneer of M.E. is wafer thin and this is about the bogus disease category of 'CFS' to the core.
To be clear, 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.
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.
Jodi Bassett, The Hummingbirds' Foundation for M.E.
August 1, 2024
A bit confusing, outdated information. I think there are better books explaining me out there.
Read
August 2, 2011one of the more helpful ME survival guides
Displaying 1 - 3 of 3 reviews