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.

Myalgic Encephalomyelitis and 'CFS' books best avoided section

The Myalgic Encephalomyelitis and 'CFS' books best avoided (or burned) section includes:

 

Note that none of these books is recommended

(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.

M. E.: Chronic Fatigue Syndrome: A Practical Guide by Anne Macintyre

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.

Living with M.E. by Charles Shepherd

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 of the disease for so long, and also played a role in the illness severely worsening over time.

Shepherds book is an utter contradiction. It has a small amount of solid information and research about ME in it, but it also strongly reinforces some of the most damaging stereotypes and myths about the illness put about by vested interest groups. This combination makes it extremely dangerous - the good information giving the bad information so much more weight and authority as it does.

Throughout this book, although a small amount of excellent information on the history of M.E. is included, you get the feeling that what Shepherd is describing is not M.E., but a short-lived post viral fatigue syndrome; such as post-glandular fever fatigue. These types of symptoms are the only ones he really mentions; fatigue, mild cognitive problems, aches and pains etc. None of the symptoms or characteristics which separate M.E. from these fatigue states is included (NMH, POTS and other cardiac and cardiovascular effects, seizures, the profound cognitive effects - none of these are mentioned.)

For example, despite the fact M.E. is known as and classified as a neurological illness, he talks about the '`transient neurological effects' of the illness, he also claims that involvement of the heart is `very unusual' - this despite the fact that many of the symptoms of M.E. are known to be caused by cardiac and cardiovascular problems and that these are an essential and core part of the illness.

Shepherd claims that vomiting should `never be ascribed to M.E,' and even more bizarrely that `nausea' only affects a `minority' of patients! The illness Shepherd describes seems to bear no relation at all to Ramsay's M.E.

The information contained in this book is contradicted by many of the more reputable M.E. experts as well as large body of medical research. This book is confusing and very misleading about many of the facts of the illness.

There are barely even mentions of the moderately affected patient in this book, let alone the severely affected. Shepherd claims to have had M.E. himself but says he was only severely affected for two DAYS. The potential severity of M.E. and all the types of symptoms which can cause this severity are not even mentioned in this book.

Shepherd also comments alarmingly and extremely ignorantly that being confined to the bed should not last any longer than a few days or at most a week and that any longer than this should be avoided and `is not necessary.' Considering that 25% of M.E. sufferers are severely affected and that many of these patients may be of absolute NECESSITY confined to bed for many months or even years at a time (and will relapse extremely severely if forced to do otherwise) these comments are not just ignorant but extremely dangerous. They leave the most vulnerable patients open to the worst physical mistreatment, these comments actually invite such mistreatment in fact. The physical and emotional damage that could be caused by doctors or parents or carers of very sick M.E. patients who have read this book and who believe Shepherd when he says that no M.E. patient needs to be bedbound as M.E. is just not ever that severe for more than a few days... defies description. This book glibly, arrogantly and unapologetically invites the very worst type of abuse upon extremely vulnerable severely affected M.E. patients.

Despite very clear and conclusive evidence to the contrary, Shepherd also completely denies that M.E. can ever be fatal.

Many have commented that he seems to be playing both sides; not differentiating between fatigue and post-viral fatigue sufferers and M.E. sufferers, advocating against CBT and GET for M.E. one minute and then supporting it in other ways the next, having links to Heathwatch (along with Simon Wessely) - and much more.

As M.E. advocate Kevin Short writes: `The MEA's Dr Shepherd has consistently undermined the WHO listing of Myalgic Encephalomyelitis (and the protection this gives to patients), and repeatedly obstructed the proper separation of psychiatric fatigue patients from true M.E. sufferers via full biomedical patient-screening by the NHS.'

See many of the papers by Professor Malcolm Hooper, Margaret Williams and Eileen Marshall for information on Charles Shepherd as well as the book `Skewed' by Martin J. Walker which details Shepherds (and Wessely's) links to Healthwatch.

Do NOT buy this book if you have M.E. or an interest in M.E. There is no useful information on treatments in this book, none of the core symptoms of M.E. are even mentioned and nor is the potential severity of the illness - and many of the most ignorant and harmful myths of M.E. which cause M.E. sufferers so much harm ARE included. There are so many other better books out there, books better than this one in every single way.

Despite the fact 25% of M.E. sufferers are severely affected and may be unable to speak/understand speech/tolerate any noise or light/feed themselves or eat solid food etc, Shepherd says glibly and ignorantly:

`It should be possible for anyone with ME/CFS not just to manage on their own, but still obtain real enjoyment out of life.'

This may be true for post viral fatigue or other fatigue syndromes, but this is an ignorant and stupid comment when you are aware of how truly devastating and disabling true M.E. can be. This comment is an absolute slap in the face for severe M.E. sufferers (as well as those who have had family members and friends die of the illness).

Clearly what is being discussed in this book is fatigue and 'CFS' - NOT M.E.

What patients 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.

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.

Understanding CFS by Dr Alastair Jackson

Dr Alastair Jackson was a busy and successful general practitioner with twenty years experience when he became ill and was diagnosed with chronic fatigue syndrome (CFS)"

Comment: A complete waste of time and money, it had absolutely nothing useful to say at all. The book is just pages full of inaccurate and offensive statements.

Any stupid bits? Lots! He thinks CFS is a much better name for this illness than Myalgic Encephalomyelitis and we should keep it (!) He talks about how having CFS may mean HALVING the usual amount of productive hours in a day – this is just so obviously a man who knows NOTHING about anything but the most mild forms of the illness. He then goes on to comment that most people with CFS are high achievers (!), that the majority of patients make a full recovery, (???), he states that CFS is a subset of chronic fatigue (!), advocates graded exercise for children with CFS (!) and the diet he recommends includes wheat, dairy products, yeast and even 2 –3 glasses of alcohol a day! He really has absolutely no idea about anything relating to CFS at all, I really do wonder if he isn’t actually discussing a post viral fatigue state. This seems very likely. In his case studies mere ‘fatigue’ does seem to be the dominant - or sole- problem for many.

Mentions of the severely affected: Absolutely none. Jackson himself only had a very mild version of 'CFS' that was at its ‘worst’ for only a very short time (only a few WEEKS actually – and even this short period included hours spent sitting up daily, many phone calls with friends and visits out of the house to the doctor!) and from his own experience he seems to assume everybody else’s illness will have exactly the same course! It’s extremely simplistic and naive. But what’s worse is that he doesn’t attribute this lack of severity to luck – he really does seem to think that it is a choice and something that through self discipline and lifestyle changes – everyone can achieve. He says of one patient who had recovered significantly "and she never once entertained the notion that she would become a long-term victim of CFS" – as if that explained it all. As if the severely ill among us have got this way from ‘entertaining the wrong notions’ somehow, through our own negative thoughts. 

Jackson has no idea what he is talking about, he knows nothing about severe or even moderate M.E. He had 'CFS' and is writing only about 'CFS.'

Quote: Despite the fact many people with ME can’t read even the simplest of novels let alone anything non-fiction he states "Being bed bound is a good opportunity to catch up on books you may not have had time to read before. I found biographies especially satisfying as well as reference books…’ He also talks about how making lots of phone calls and watching lots of TV are great things to do when you are in the severe stages of ME. As I said – he has NO IDEA about what M,E. actually is and that it is not 'CFS'!!

(This was the book I was thinking about when I mentioned that some of them deserved to be burned!)

I Remember ME (a documentary film) by Kim Schneider

This was just awful and so, so depressing, it was so BAD. It could so easily have been so much better. All the real and shocking fcats are ignore for whiny pity pieces and wishy washy scinece and descriptions of fatigue.

I bought this to educate some of my friends and family on my illness (in the early days, before I fully got that M.E. and 'CFS' are not at all the same thing) a bit more but having seen it now there's no way I'm ever letting them see it. Ever.

I hid my copy and the back of a drawer for years. I thought about selling it as it cost me a fair bit and money is tight, but decided that I just couldn't in good conscience, so I finally destroyed the tape and threw it out.

Avoid this one at all costs. It is cringe-worthy if you know patients with M.E., or any serious disease misdiagnosed as 'CFS' or know even a few facts about M.E. - and even if you don't!

Some real facts about M.E., almost none of which are mentioned in this 'CFS' video:

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.


M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were 'atypical multiple sclerosis' and 'atypical polio.'


M.E. is an acute (sudden) onset neurological disease initiated by a virus infection (an enterovirus) with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. This is always damaged in M.E., hence the name 'Myalgic Encephalomyelitis.'

M.E. has existed for centuries. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.

There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. M.E. can be at least as disabling MS or polio, and many other serious diseases. M.E. is a chronic/lifelong disease that in some cases is fatal.

M.E. is a testable and scientifically measurable disease with a number of unique features. It is not difficult to diagnose, even within just a few weeks of onset, using a series of objective tests.

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.




Maryann Spurgins review of this film is entitled:
Remember Me is Forgettable

Leonard A. Jason's review is entitled: Perpetuating the Myth

Chronic Fatigue Syndromes And Vasoactive Neuropeptide Autoimmunity by Don Staines

This book is depressing. There is enough evidence in this book to show that that author has done some genuine research into the early outbreaks of Myalgic Encephalomyelitis (M.E.) and on the genuine M.E. research of the 50s, 60s and 70s - before M.E. became conflated with the bogus disease category of 'Chronic Fatigue Syndrome.'

Considering all the genuine information the author had, that he has somehow been unable or unwilling to see the vast differences between M.E. and 'CFS' is baffling and disappointing. The author has the information which shows that M.E. is a distinct, organic, neurological disease which occurs in epidemic forms yet thinks this is the same as 'CFS' which is a wastebasket diagnosis based on medically unexplained fatigue. The two are apples and oranges.

The author could have busted the myths about 'CFS' but has chosen instead to reinforce them. This book is just gibberish. 'CFS' is made up of patients with hundreds of different diseases. Seriously analysing 'CFS' studies to try and come up with a single cause or treatment for this very diverse groups of patients is unscientific. There will never be one cause of 'CFS' as it is not a distinct disease.

Saying you have found the most likely cause of 'CFS' is just silly. Like if you claimed to have the sole cause of itching say, or sleeplessness. There are so many causes of all these things that even trying to find a single cause is just ridiculous. Even worse this book says M.E., CFS, GWS and FM are all basically the same thing. But M.E. is not a fatigue syndrome and is also not medically unexplained.

To explain a bit further:
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 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.

This book should be avoided, as should the International Consensus Criteria the author is involved with - new definition of 'CFS' which (appallingly, unscientifically and unethically) tells patients that fit this vague non-M.E. definition that they should start telling everyone that what they have is M.E.

Good intentions (which the author seems to have) are just not enough when the most basic facts, history and logic are ignored. Sadly it is the patients that pay the price for such poor work and lack of political guts and nous - both M.E. patients and those misdiagnosed with 'CFS' that do not have M.E.

See books by Dr Hyde or articles by Dr Dowsett and others to learn more about M.E. and the politically motivated disease category of 'CFS.'

From Fatigued to Fantastic! by Jacob Teitelbaum MD

Any book that uses the terms fatigue, chronic fatigue, CFIDS and even M.E. INTERCHAGEABLY as if they were the same thing and promises easy cures is 100% likely to contain absolutely no useful information for true ME sufferers at all, and it doesn't. The title says it all really.

The scientific study mentioned on the back cover of the book etc. was done on 64 people with chronic fatigue and I think that just about says it all. As if the 'CFS' definitions wrren't silly and useless enough! He actually complains that the CDC's definition of CFS is too rigid and STRICT as he thinks that people with severe fatigue (lasting at least one month) and those who have true ME show exactly the same immunologic changes and responses to treatment.

This is a book on fatigue and has nothing to offer anyone with ME except false hope and potentially dangerous medical advice.

It is also not useful for those with diseases misdiagnosed as 'CFS' even even anyone except MAYBE those with very mild and short term fatigue. A one size fits all approach to fatigue, a symptom of hundreds of dfferent diseases with many different causes is just so unscientific.

He writes that "If you have unexplained fatigue that significantly interferes with your functioning and is associated with any two of the following symptoms - brain fog, poor sleep, diffuse achiness, increased thirst, bowel dysfunction and/or recurrent and/or persistent infections or flu-like feelings - then you have CFIDS until proven otherwise!"

By this definition he estimates that 25 MILLION Americans have CFIDS, over 50 million people worldwide. He puts this down mainly to type A perfectionist personalities (caused by low self-esteem in childhood) leading to burnout from the busy and stressful modern world. Fibromyalgia on the other hand is a fear response according to Teitelbaum, a clear example of a `chronic fear condition' where the world has become `a fearful place'.

He also says that treatment (and recovery) is available for 85% of these patients, .... do you think that these patinets could be the 85% who only have mild fatigue instead of true ME or any other distinct and serious disease by any chance?

Not only doesn't he mention the severely affected, he doesn't even mention the moderately affected!! He uses the term `fatigue patients' constantly, it's just so bad, so utterly ignorant and dangerous, it's mind blowing.

To be blunt... Avoid this book (and anyone who thinks it has all the answers) like the plague, I'd buy up and destroy every copy if I could. I am so sick of morons who have read this book coming into support groups full of extremely severely ill people and telling us that they have all the answers to completely curing all our illnesses and that we could recover right now if we wanted to and that if we don't listen to everything they have to say and do exactly as they say then we are obviously choosing to remain ill and must be getting off on our sick roles in some way. This book leads to a lot of abuse.

Please note: Some of the treatments Teitelbaum recommends are extremely dangerous if you have true ME and not merely a fatigue problem. The same is true if you have a serious disease that isn't M.E., that has been misdiagnosed as CFS. Please seek REAL medical advice!!!

What patients 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.

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.

Parting the Fog by Sue Jones

Information about FMS (written by someone with FMS) with worksheets for you to fill out at the end of each chapter to perhaps show to friends or family that you’d like to understand your illness better, plus lots and lots of long poems about different aspects of the illness experience written by Jones herself.

Comments: First of all, the medical information given is terrible – she uses the terms CF and CFS interchangeably, and says she is talking about FMS and CFS as one illness.

There is much talk of doing foolish things because of brain-fog for example but none of the more serious cognitive problems of aphasia and memory loss common in ME, no talk of being bed-bound or dying from the illness either or any talk of viral onset, only 'stress' related onsets are mentioned.

What the author is really talking about is mild – moderate FMS. Not M.E. For all that though you just can’t help but like Sue after reading this book and so if you do fit into that category, (mild-moderate FMS) this may well be quite a useful book for you to explore your feelings and experiences of your illness and perhaps share them with others and I'd highly recommend it if you fit that description. (It is a really terrible and inappropriate book if you have ME however which is why it's in this section.)

CFS: An integrative Approach to evaluation and Treatment by Demitrack and Abbey

New Age "Science" or Pseudoscience, a review by Maryann Spurgin, Ph. D. (on the ME Society of America website)

The Psychopathology of Functional Somatic Syndromes By Peter Manu

A review by Anthony L. Komaroff, M.D. (on Co-Cure).

An excerpt of the book is available online at this time (but may not remain so)

Living with CFS: The Bitter and the Sweet by Mary Jahne

I feel like I was even less certain of the facts of ME or 'CFS' after reading this book than before. I found it extremely muddled and rambling throughout and very, very hard to get through. One of the most difficult and almost impossible to read books I've ever read. Would be impossible to read for most people with ME and you wouldn't want to reccomend it to anyone as they very well might get completely the wrong idea about it as the message is just so unclear. It is one very very long, 'hard to determine the point of' ramble. This is not a book about M.E.

I'm sure the author is very nice person, this review is very negative because I do not wish others to spend their valuable resources on such an unhelpful and unworthwhile book as money and ability to read is often in such short supply.

I'm Not Crazy, I'm Just a Little Unwell by Leigh Hatcher

(This review also contains comments about the current (worrying) state of Australian 'CFS/ME' societies. These comments directly follow the book review.)

This Australian book describes the author’s experiences of a post-viral fatigue state following a hepatitis infection (which he calls ‘CFS’); his struggle with the public’s perception of ‘CFS’ and his recovery over 2 years from the illness which he says was primarily due to following a low-GI diet and following a graded exercise regime.

Comments: The title of this book says it all. Could anyone who really knew what M.E. was like talk about it like this? (Even as a joke?) This question (on reading the book) is moot because Hatcher did not in fact have M.E. but instead suffered with severe fatigue following viral hepatitis. He had a post-viral fatigue state, and not Myalgic Encephalomyelitis.

When Hatcher uses the term CFS, he is NOT discussing M.E.  but instead a self-limiting post-viral fatigue state. This is an entirely unrelated condition to Myalgic Encephalomyelitis, the two share little (if anything) in common. They each have a different cause, symptoms, aetiology, pathology (tests results), responses to treatment and long and short term prognosis. They are chalk and cheese to each other, unrelated except for the politically and financially motivated bogus ‘redefining’ of M.E. as ‘CFS’ in the 1980’s in the USA.

This is not an assumption or any type of unfair accusation as the truth about Hatcher’s medical diagnosis is spelled out clearly on his website which states: ‘It began as a viral hepatitis from which he recovered, but his health would never be the same again’ and ‘Leigh's diagnosis from Dr. Loblay: a 'Post-Viral Fatigue' state.’ (Loblay is well-known for supporting much of the worst ‘CFS’ propaganda. He refers to ‘CFS’ as being the same as post-viral fatigue states and also a ‘mysterious’ fatigue state in which there are no objective or testable abnormalities etc.)

One article, for example, talks about how Hatcher ‘remained hopeful, optimistic, purposeful and occupied throughout his illness, he did not suffer the "brain fog" which affects many people with ‘CFS.’ This is also very telling. Name me one person with authentic M.E. who is not significantly cognitively affected. You couldn’t, because the cognitive effects of M.E. are a core part of the illness – causing much of the high level of disability – and are an essential part of the diagnosis, of what M.E. is. (The cognitive effects in M.E. are also much more severe and profound than mere ‘brain fog’ but that’s another article!)

When Hatcher used the term ‘CFS’ he is talking about Fukada CFS; this is the definition he uses. The Fukada definition of ‘CFS’ does not describe or define M.E. but merely a whole ragbag of different illnesses which have little in common but the symptom of fatigue. Fatigue is only a minor and unessential symptom of M.E. Fukuda ‘CFS’ (along with all other ‘CFS’ definitions) is not a distinct or meaningful diagnosis. It is always merely a misdiagnosis.

  • See Smoke and Mirrors for more information on the meaninglessness of a diagnosis of ‘CFS’ and why the bogus disease category of ‘CFS’ must be abandoned for the benefit of all patient groups involved.

Further proof (although none is needed) is the statement ‘Leigh commenced a 'diabetic lifestyle' [by following a low GI diet] with graded exercise. He improved in health within two weeks, and became significantly better.’ People with M.E. do not improve with exercise. They cannot. Being made worse by exercise is one of the core characteristics of M.E. without which a diagnosis should never be made. The only way a program of graded exercise can be beneficial is if:

  1. The disease is in significant remission and the exercise occurs after this recovery ie. The exercise happened at the same time a spontaneous recovery did and the exercise is mistakenly being given the credit for a recovery that was going to happen anyway.  The exercise given would laos have to naturally be within the patinets’ physical limits at that time.
  2. The person did not in fact have M.E., but some form of chronic fatiguing illness which may respond well to exercise, or may also have resolved naturally at the same time (as explained above).

Graded exercise cannot improve M.E. If you improved with exercise you did not have M.E. and have not been correctly diagnosed (or, as outlined above, you no longer had ‘active’ M.E. and are one of the lucky 6% who recovers almost totally).

The reality is that it is vital that M.E. patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness. There is nothing to be gained by people with M.E. pushing themselves beyond their individual physical limits as this can only result in unnecessary relapses and so be counterproductive. Permanent damage (eg. to the heart) and disease progression may also be caused and there have also been reports of sudden deaths in M.E. patients following exercise. Graded exercise programs are the actual reason many with M.E. are so severely affected.

So why is all this relevant if Hatcher only uses the term ‘CFS’ and never claims to be talking about M.E.? It is relevant because what he says about ‘CFS’ WILL BE applied (and widely thought to apply) to M.E. sufferers (many of whom have never even heard of M.E. and the vast majority of which will have a ‘CFS’ diagnosis only). Many doctors (as well as the wider public) are also not familiar with the difference between M.E. and ‘CFS.’

This is why, despite the fact he doesn’t even mention M.E. (and in defence of the author,  it should be said that he never once claims to have M.E.) Hatcher risks the long-term heath and even the lives of many people with M.E. because he doesn’t communicate in his book the enormous difference between post viral fatigue (and other fatiguing diseases commonly misdiagnosed as ‘CFS’) and M.E.

He also omits an explanation of the history of M.E. and the psychiatric persecution of both M.E. sufferers and of those misdiagnosed with ‘CFS.’ The reason for this omission is unclear but seems very much not to be malicious, yet this is still unforgivable as so much information on this topic is freely available for those who care to look and the harm will be done to M.E. sufferers (and those misdiagnosed with ‘CFS’ with other illnesses) just the same, regardless of the intentions. If only he had had some REAL reading material; Hooper, Hyde, Dowsett etc. instead of the nonsense spouted by Loblay. If only he’d given a basic overview of the history, and the vested interests groups involved and on the difference between M.E. and ‘CFS’ you get the feeling he’d have been a force to be reckoned with probably!

Thus although Hatcher explains at length in his book how the misunderstandings about ‘CFS’ have adversely affected him, his book makes sure this will probably continue to happen (and much worse) to countless others unfortunately. This book propagates and actively supports some of the most harmful propaganda and myths about ‘CFS’ that there are.

This book review may sound harsh (and is harsh), but this pales in comparison to how ‘harsh’ (understatement) the effects of GET, false hope and the misinformation fed to the public will be to those truly affected by M.E. This book could cause severe further abuse to be caused to M.E. patients, and it could ruin lives, or even contribute to ending a life if someone with M.E. reads it and is ignorantly encouraged to ‘exercise themselves back to health.’

Rating: Save your money, there’s nothing worth seeing here if you have M.E. (and much you need to avoid).

 

Some additional comments with regards to the support of this book in Australia by our 'CFS/ME' societies

Unfortunately, many of Australia’s M.E. societies (or ‘CFS/ME’ societies) have very much come out in support of this book. This is a book which strongly supports the idea that graded exercise therapy – the single most harmful and useless ‘treatment’ for M.E. which exists – can be curative for the condition. It also reinforces many of the worst myths about the illness, including the myth that a post viral fatigue state is the exact same thing as M.E. If a book which does all this is considered a ‘good’ book one wonders what on earth a bad one might look like!

The Australian M.E. societies were created to advocate for people with M.E., to try to protect us from the effects of ignorant and financially motivated psychobabble and to instead promote the facts. But not only are they now not defending us from this sort of ignorant and incorrect material, they are actively promoting it to us. How did things get so bad at our societies? So completely off target?

The South Australian Society supports this book, as does the Victorian Society. The Canberra Society also comment that this book is ‘worth checking out.’ Despite all the very clear information about Hatcher’s true diagnosis of a post viral fatigue state, the NSW ‘CFS/ME’ society describes Hatcher as suffering from ‘a severe bout of M.E.’ Clearly they have no idea of what M.E. is, nor even the most basic understanding that if someone with M.E. were of the same illness level at Hatcher, this would be very very MILD M.E., nothing like a severe case. (Leigh Hatcher is now also Vice-Patron of the NSW Society. He also runs an online discussion group on ‘CFS.’)

This comment shows an appalling amount of ignorance of the most basic facts about M.E. – and this from the people who are supposedly our primary advocates in this country… This comment also shows that although Hatcher doesn’t use the term M.E. for his illness, others do and so the problem of his comments on ‘CFS’ being misconstrued as also relating to M.E. is very real.

It seems that those at the NSW ‘CFS/ME’ society (etc) are as uneducated as Hatcher himself when it comes to knowing the difference between post-viral (and other types of) fatigue and actual neurological M.E. (as described by Ramsay etc.) … either that or one must assume that they do know the difference, but are now knowingly presenting people with various types of fatigue as being representative of what M.E. is, just as the propaganda (they were meant to be opposing) dictates.

The mind boggles at how bad a book would have to be in Australia before it is rejected by the M.E. community at large – as this book so obviously deserved to have been – despite it’s clear good intentions.

The M.E. advocacy situation in Australia is dire, and has been for some time. The overwhelmingly positive response to this well-meaning but incredibily ignorant and misleading (and therefore dangerous) book is a prime example of that. The Australian ‘CFS/M.E.’ societies now seem to be advocating solely for miscellaneous (and far more able-bodied) fatigue sufferers and representing these people as being M.E. patients or ‘ME/CFS’ or ‘CFS/ME’ patients. M.E. sufferers seem to be being ignored almost entirely. This does real harm to those with M.E. but also negatively affects all those with various conditions with fatigue as a symptom who have been misdiagnosed as having ‘CFS.’

They are becoming, or already are, mere ‘Chronic Fatigue’ societies and staunch defenders of the status quo. The status quo being the way things are; 1.) where people with M.E. are commonly abused and treated as psychiatric cases, denied appropriate treatment and any sort of understanding or compassion from the community; 2.) and where people with a wide variety of fatiguing illness are misdiagnosed as ‘CFS’ and so denied appropriate diagnosis and treatment, and may be recommended or forced to submit to inappropriate and useless psychiatric ‘treatments’ such as CBT and GET.

None of the patients involved are helped by this ‘CFS’ misinformation and propaganda.

Hystories by Elaine Showalter

Review of Elaine Showalter's Hystories by Mary Schweitzer

An excerpt:

The reader searching for a summary of the literature on the disease syndrome CFS will be quickly disappointed, however. There is none, not in the text, not in the footnotes, not even in an appendix. Quotes were lifted seemingly at random from a few existing trade books on the subject, articles in such sources as "USA Today," "The Independent," "McCall's," and "Newsweek," and a single symposium held in London in May, 1992 (p. 130). The lone exception to this pattern came in frequent references to Showalter's London mentor, psychiatrist Simon Wessely. While including mention of Wessely's publications, however, she omitted all mention of existing published works in scholarly journals disputing Wessely's thesis.

Miscellaneous non-recommended books

None of these books are recommended for M.E. sufferers.

These books are not recommended because they; do not distinguish appropriately (or at all) between mere fatigue and the illness of M.E., offer inappropriate medical advice which may help some fatigue sufferers but is inappropriate or dangerous for people with M.E., offer unrealistic expectations of response to treatment and recovery based on confusion with fatigue sufferers, or they propagate many of the myths and propaganda about the illness which do the M.E. cause (and community) so much harm - as well as all those misdiagnosed with 'CFS' who have other serious non-ME diseases and which also need real medical care.

  1. Adrenal Fatigue: The 21st-Century Stress Syndrome.
  2. From Fatigued to Fantastic! by Jacob Teitelbaum
  3. Conquering Chronic Fatigue: Answers to America's Most Misunderstood Epidemic.
  4. Chronic Fatigue Syndrome: Your Natural Guide to Healing with Diet, Vitamins, Minerals, Herbs, Exercise, and Other Natural Methods.
  5. Chronic Fatigue Syndrome and the Yeast Connection: A Get-Well Guide for People With This Often Misunderstood Illness--And Those Who Care for Them
  6. America Exhausted: Breakthrough Treatments of Fatigue and Fibromyalgia.
  7. Tired of Being Tired: Overcoming Chronic Fatigue & Low Energy 
  8. Living Well with Chronic Fatigue Syndrome and Fibromyalgia : What Your Doctor Doesn't Tell You...That You Need to Know 
  9. Gentle Medicine : Treating Chronic Fatigue and Fibromyalgia Successfully with Natural Medicine
  10. Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia and Environmental Illness
  11. Facing and Fighting Fatigue : A Practical Approach
  12. M.E., Chronic Fatigue Syndrome and Fibromyalgia - The Reverse Therapy Approach by John Eaton
  13. Recovering from M.E.: A Guide to Self-empowerment by William Collinge
  14. Chronic Candidiasis: How You Can Benefit from Diet, Vitamins, Minerals, Herbs, Exercise and Other Natural Methods by Michael T. Murray, Jennifer Basye Sander (Editor)
  15. Chronic Fatigue Syndrome: The Facts by Michael Sharpe, Frankie Campling
  16. Overcoming Chronic Fatigue by Mary Burgess, Trudie Chalder
  17. Self Help for Chronic Fatigue Syndrome: A Guide for Young People by Trudie Chalder, Kaneez Hussain
  18. Counselling for Chronic Fatigue Syndrome by Trudie Chalder, Alicia Deale
  19. Coping with Chronic Fatigue (Overcoming Common Problems) by Trudie Chalder (Introduction by Simon Wessely)
  20. When You Want to Say Yes, But Your Body Says No: The Proven Mind-body Plan to Beat Chronic Fatigue and Stress-related Illness by Liz Tucker
  21. Chronic Fatigue Syndrome: There Is a Cure by Patricia J. Taylor
  22. Chronic Fatigue Syndrome: A Natural Way to Treat M.E. by Basant K. Puri, Professor Basant K Puri
  23. The Natural Way to Beat Depression: The Groundbreaking Discovery of EPA to Successfully Conquer Depression; Paperback ~ Basant K. Puri, Hilary Boyd
  24. The Chronic Fatigue Healing Diet (Overcoming Common Problems S.); by Christine Craggs-Hinton
  25. Chronic Fatigue Syndrome, ME and Fibromyalgia: The Long Awaited Cure; by David Mickel
  26. Erica White's Beat Fatigue Handbook: Break Free from Chronic Fatigue for Good by Erica White
  27. Tired So Tired: And the Yeast Connection by Bernard Rimland (Foreword), et al
  28. Living with a Long-term Illness by Frankie Campling, Michael Sharpe
  29. Chronic Fatigue Syndrome: The Facts by Michael Sharpe, Frankie Campling
  30. Can God Help M.E?: Hope for Those Suffering from Chronic Fatigue Syndrome by Liz Babbs
  31. Understanding Chronic Fatigue Syndrome: Better Ways of Managing Your Lifestyle by Alastair Jackson
  32. Hiatal Hernia and Chronic Fatigue Syndrome: And Many Other Diseases Healed Naturally Through the Power of Cause and Effect by Patricia Ann Hellinger
  33. Chronic Fatigue, Fibromyalgia, and Lyme Disease by Burton Goldberg, Larry Trivieri
  34. Conquering Chronic Fatigue: Answers to America's Most Misunderstood Epidemic
  35. Silent Hypothyroidism/Fibromyalgia/Yeast Overgrowth Syndrome/Chronic Fatigue Syndrome by Jonathan Forrester
  36. Herbs for Chronic Fatigue by Kathi Keville
  37. Acupuncture Physical Medicine: An Acupuncture Touchpoint Approach to the Treatment of Chronic Fatigue, Pain and Stress Disorders by Mark D. Seem
  38. Bible Cure for Chronic Fatigue and Myalgia: Ancient Truths, Natural Remedies and the Latest Findings for Your Health Today by Don, M.D. Colbert
  39. Chronic Fatigue and Tiredness: A Self Help Program by Susan M Lark
  40. The Downhill Syndrome: If Nothing's Wrong, Why Do I Feel So Bad? by Pavel Yutsis, Morton Walker
  41. ME (Chronic Fatigue Syndrome) and the Healer Within by Nick Bamforth
  42. Chronic Fatigue: Poisoned by the Mercury in Your Mouth? by Annika Jeppsson-Mcclintock, Christer Malmstrom
  43. Eighteen Natural Ways to Beat Chronic Tiredness by Norman D. Ford
  44. The Bowersox Protocol for Fibromyalgia and Chronic Fatigue by Dr. Harold Bowersox
  45. Chronic Fatigue Busters: What to Do When Your Doctor Gives Up by Crystina O'Brien
  46. Energy Drainers, Energy Gainers: Solutions to Chronic Fatigue by Paul Reisser
  47. Chronic Fatigue (ME Association Special Edition) by Netdoctor
  48. Doctor- Why Am I So Tired?: Discover and Overcome the Hidden But Real Medical Causes of Chronic Fatigue by Podell Richard N.
  49. User's Guide to Chronic Fatigue and Fibromyalgia by Laurel Vukovic
  50. Bailliere's Clinical Psychiatry: Psychosocial Aspects of Chronic Fatigue Syndrome (Bailliere's Clinical Psychiatry S.)  S. Lynch (Editor)
  51. Chronic Fatigue: The Silent Epidemic by William Vayda
  52. How to Have Super Energy in a World of Chronic Fatigue by Robert Atkins
  53. Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment by William Collinge
  54. Curing Fatigue: A Step-By-Step Plan to Uncover and Eliminate the Causes of Chronic Fatigue by David Sheffield Bell, Stef Donev
  55. Tired All the Time: How to Regain Your Lost Energy by Ronald L. Hoffman
  56. From Fatigued to Fantastic!: A Manual for Moving Beyond Chronic Fatigue & Fibromyalgia by Jacob Teitelbaum

Of course this is not an exhaustive list - there are many more useless and ignorant books out there unfortunately.

Add to this list of resources to avoid, any book (or website, newsletter, TV segment, radio segment, newspaper article, research – or anything else) that; uses the term ‘chronic fatigue’ in the title, or which uses the term ‘chronic fatigue’ interchangeably with CFS or CFIDS or ME anywhere in the text, which claims that the illness is a new 21st Century disease caused by the ‘busy stressful modern world’ or your supposed perfectionist personality (even if you happen to have one it’s irrelevant and didn’t cause you to get M.E.), or which claims that the illness can be easily cured with exercise, psychotherapy, stress reduction, an anti-candida diet, various vitamins and other treatments or anything else. Also avoid anything which talks about M.E. being: ‘mysterious,’ or ‘an amazing illness which crosses the boundaries between the body and the mind,’ of having no tests which can aid diagnosis, of even being an illness where ‘no tests have ever shown anything,’ or which claims that the illness is a problem of fatigue following glandular fever, or that the illness is caused by the Epstein-Barr virus, glandular fever or candida, or is the same illness as Fibromyalgia or anything else. These are all just useless and harmful myths and propaganda.

  • For more on some of the most common myths of M.E. see What is M.E.?

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Exciting book news!

Click here to purchase the first HFME book!


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