The Books not directly related to M.E. section includes:
Before reading the research/advocacy information given in the book reviews and books on this page, please be aware of the following facts: 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.
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.
I just love the concept of this book.
The way that positive thinking is used by some people to spare themselves from having to listen to you, help you or really try to understand the reality of illness when you are seriously ill is something that comes up a lot in the chat groups for ill people I am a member of. On the surface they are being kind and offering you 'positive thoughts' but it is really about this serving their needs rather than yours.
Expressing legitimate anger is helpful and necessary. If you do this it passes quickly! Far better to vent for a little while to friends who understand than to repress all your feelings and so end up feeling unhappy far longer, in the end.
The chapter on positive thinking and illness was good but really only scratched the surface. I was somewhat disappointed by it as there was so much that could have been said on this topic and I'd have loved lots more comments on this topic to have been in the book. But then I am biased and this is a special interest subject of mine and probably this short chapter was more than enough for the average reader, so fair enough.
The way the author ties in positive thinking brainwashing to political apathy in the last chapter was very well done too and I couldn't agree more with her conclusions. As someone involved in trying to fire people up to participate in activism I absolutely find the 'nicey nicey at all costs' mindlessly positive attitude to be an enormous obstacle in effecting real positive change. Just enormous.
I highly recommend at least searching your local library for a copy of this book, it deserves to be widely read.
This book promises to make you think about fat in lots of new ways and that is exactly what it does. Although this is a book on 'anthropology' it is very easy to read and also a very enjoyable read. It is very intelligently written and is sure to make you aware of issues surrounding fat that you weren't aware of previously.
This book, like Fat Is a Feminist Issue which I also read (finally!) recently, leaves you with lots of food for thought.
The standout essays for me were the first and last ones featured in the book.
Rebecca Popenoe essay on villages in Niger where women try to be as fat as possible was as fascinating as it was disturbing. I think being force fed millet porridge to become as fat as possible in your youth is just as bad if not worse than a society being obsessed with thinness.
The final essay on the activist group Pretty Porky and Pissed Off was funny, and intelligent and fiery ...and made me want to march on the streets and join the group members in throwing peanut butter sandwiches at people. (I agree with the need for advocacy and the sandwich throwing bit just sounded really fun.)
The essay on olive oil was very good as well and made me want to put good quality extra virgin oil on something and eat it, immediately.
The essays are each quite short and the book is short so I don't want to write too much and give too much away to those that are yet to read this book.
I did have one quibble with this book though, and that is in the quality of the nutritional information it gave about fat. I know that this topic is really beyond the scope of this book. I understand that. This book would be absolutely hideous if it had a weight loss diet plan at the back of it!
I'd not have said anything if the dietary fat information had been neutral, but it wasn't neutral. Unfortunately this book was very dietary fat phobic, and reinforced some of the worst myths about dietary fat being bad for our health and something to fear and avoid at all costs.
Not being unreasonably scared of dietary fat is important and is very much tied in with accepting fatness and fat people and our own fat, I feel, and so I'd like to set some of those myths straight, briefly.
Embracing fats is also very good for your physical health!
*Dietary fat information interlude*
In the brilliant book The Diet Delusion: Challenging the Conventional Wisdom on Diet, Weight Loss and Disease and Good Calories, Bad Calories: Fats, Carbs, and the Controversial Science of Diet and Health (Vintage) Gary Taubes explains that:
1. Saturated fat and cholesterol in the diet DO NOT cause heart disease.
2. Your body needs saturated fat and cholesterol to function properly.
3. The 'calories in, calories out' mantra is a myth. Overweight and obese people often eat no more calories, or even less, than their thinner counterparts
4. Dietary fat, including saturated fat, is not a cause of obesity. Refined and easily digestible carbs causing high insulin levels cause obesity.
5. Most people are overweight due to bad medical advice, NOT a lack of willpower, greed, laziness or because they lack 'moral fibre' or eat too much fatty and greasy foods!
For more on cholesterol see The Great Cholesterol Con: The Truth About What Really Causes Heart Disease and How to Avoid It
Other books which celebrate fats and oils and even the much maligned animal fats include Real Food: What to Eat and Why and Know Your Fats : The Complete Primer for Understanding the Nutrition of Fats, Oils and Cholesterol. The Weston A Price Foundation site is also very good and gives lots of information on why we need to eat real traditional foods to be healthy and why heavily processed foods are making us ill and fat, not old fashioned foods with fat in. One of my favourite quotes from the site is how you should always add enough butter to your bread so that when you've taken the first bite, the butter has 'teethmarks' in it!
The book Deep Nutrition: Why Your Genes Need Traditional Food explains why avoiding fats (including saturated fats) and other traditional foods in our diets can have negative consequences for you and also for your offspring but how these can be turned around by eating real food.
Most of the information we are given about fats is wrong. Saturated fat sounds scary and gluggy and is often described as 'artery clogging' and 'not heart healthy' but the truth is very different. Saturated fat isn't saturated by some sort of horrific 'glop' but by hydrogen! The same element that is in water.
Saturated fats such as coconut oil are an important part of a healthy diet. We need to eat them to be healthy. Don't believe all the saturated fat hype!
Trans fats and hydrogenated vegetable oils are to be avoided, but not all fats should be tarred with this same brush.
Non-factual mentions of dietary fat in the book include the following:
- Despite the fact fattening up diets were described as consisting of millet porridge and milk - which does have some fat in but also lots of sugar - the fattening up diet was summarised by the author as causing weight gain because it was high in fat.
- One essayist writes, 'Modern eaters don't need these fat calories in their diets' and comments that while it was necessary for people to eat lots of fatty natural foods in the past, this isn't true today where the only reasons we might eat them are prestige and luxury and taste. Our need for fats in the diet, including saturated fats, are the same now as they were hundreds of years ago! They taste good because we are supposed to be eating them.
- The fact a food contains cholesterol is commented on as if this is synonymous with it being unhealthy, which isn't at all true.
- The book claims that whipped cream hardens your arteries, which is just not true; the saturated fats = heart disease theory has been scientifically dis-proven.
- The idea that someone battling illness would try hard to avoid natural whole foods with cholesterol and saturated fat in, nutrients that are good for you and essential for health, and replace them with lots of pasta, a highly processed junk food which has nothing in it whatsoever that is good for you and is just turned into sugar by the body, is appalling. Sugar depresses the immune system and causes all sorts of problems, as is well known. Etc. etc.
This book is great but may be even more powerful if you can combine reading it with reading about why dietary fat is good for you and not the enemy.
Double fat acceptance has to be a good thing!
Again, I think they each feed into the other, no pun intended.
*Annoying nutrition lecture over*
This book has a great cover page design as well, I love it.
I highly recommend this book. I don't buy many books but I am glad I bought this one. I look forward to loaning my copy to a few friends and family members and then talking to them about what they thought about it, too.
This is a book I have heard mentioned every now and then for many years and I have always wanted to know what the book was about. So when I saw a cheap used copy I couldn't resist buying it to find out.
I'm somewhat overweight and have many serious health problems, which contribute to my weight issues in a number of ways. I didn't expect to relate so much to the different reasons that I could be choosing to stay overweight, but after reading this book I now have no doubt that at least part of my inability to maintain a healthier weight is not physical.
I'm a feminist, of course. (I don't understand at all any woman who wouldn't want to be identified as a feminist, someone who supports equal rights for men and women, and who find the term cringe-worthy. It is only a terrible term if you believe all the anti-feminist and status quo supporting media and propaganda and so on, surely?) But I was surprised in reading this book how much of it really hit home with me, but how little any of it had to do with my gender or with feminism!
Not all the possible reasons for staying overweight had to do with feminism, as the title of this book may suggest. In fact, the vast majority of them did not. Some of the parts which did have to do with gender, such as mother-daughter competitiveness issues, I didn't relate to at all, possibly because they the book is very dated. (My mother has always worked and so doesn't envy my ability to work, for example.)
Some of the book is very dated, but it is easy enough to skip over those parts and to spend time contemplating the more timeless concepts. I'd very much recommend this book for men dealing with high or low weight issues, as well as women. It is a classic and you're sure to gain some real insight into your unconscious thoughts and actions by reading it.
This book provides lots of food for thought!
This is the sort of book that should be essential reading for everyone. Even if you are aware to some extent that our media (and government) plays to the tune of the corporations with the most financial power, and is anything but a source of actual unbiased news, this book is an enlightening and fascinating read.
This book explains that 40% of all news flows virtually unedited from PR companies, that there are more people working in PR than in journalism, and that most of what you see on the news is not news. It explains that those making US health care reform so difficult are lobbyists for the insurance and drug industries (obviously!). It also explains that there is no limit to how low corporations will go to protect their bottom line, subvert genuine activism and the state of knowledge in the general population on a topic.
There are also interesting parts in this book which discuss the way in which polluters and other groups organise campaigns against genuine advocacy efforts, such the book 'Silent Spring' and others. Negative articles and reviews may often even be written before the books are released. Nothing is left to chance. The books are systematically rubbished and denigrated and so are their authors.
It also writes brilliantly about the worrying rise of pretend 'grassroots' activist groups, AstroTurf groups, and how they are manipulating and subverting genuine advocacy attempts. It also discusses some of the shocking ways in which groups have planted fake members into real groups, with sometimes devastating personal effects for the individuals involved and also worked to co-opt genuine members of groups to completely turn against what they stand for. It tells these people that they aren't selling out, but just being 'realists' and persuades them to see the non-sellouts who want real change and refuse to compromise away the truth as being 'extreme.'
This book explains so much about so many truly terrible 'activism' groups out there!
This book talked about something I had long suspected, which is that the big 'advocacy' groups have in many cases been bought out or subverted by the vested interest groups they were created to bring to account. They are not even remotely working to push for real change. So groups which started with the aim to promote real change become a main reason why change does NOT occur, by doing nothing useful themselves and sucking up all the money and attention there is on a topic - leaving genuine small groups that are actually after real change with none.
Again, this explains so much.
Why we don't know about all this is because the media doesn't really report on itself or on PR. So the myth of a crusading media which holds groups and individuals harming the public to account, and whose work leads to government action, remains.
As someone says in the book, this book 'explains exactly how the magic of modern PR transforms the favoured policies or the rich and the powerful into incontrovertible common sense.'
And 'This is a war of the powerful against society.'
Understanding the concepts in this book is central to having a true understanding of our time and so books like this one are really important.
I wish more people knew to really question the really big health, environmental and other advocacy groups and the bogus information they support.
I also hope that people come away from reading this book prepared to look twice at all the issues that our modern media have told us are 'just obvious common sense' but where we are being hugely played and lied to.
The area of health is particularly surrounded by misinformation. Even worse, people are far more accepting of the health related news propaganda as being truthful. But science reporting is anything but black and white. Every news story on health is on the news because someone has paid for it to be there! It is not because it is genuine news, or because their 'breakthrough' really is so very important or because it really has been proven that non-drug therapy 'x' is completely useless in treating anything.
On a practical note, however, I do have to note that this book was VERY hard to read due to its being printed in light type that was very small and perhaps 9.5 point. The title and content are excellent. If only it had been better typeset! It gave me eyestrain!
The book could also have been improved by having some sort of a summary of the key points at the end, possibly.
I came away from reading this book grateful that the authors had written it, and also in absolute awe of all those amazing individuals that have stood up to these corrupt groups and corporations in various ways and have lost everything by doing so; their careers, their houses and all their money, and their reputations. Such sacrifice is awe inspiring, although the fact that it is necessary is maddening.
In a nutshell, be wary of big 'advocacy' groups whose bottom line is their own bottom line, and support small genuine advocacy groups that are working for real change.
Beware too of 'experts' and commonsense unquestionable 'facts' - look at the facts logically and follow the money!
I thought this was a novel when I ordered it. It turned out to be pretty good and I feel I got something out of reading it and so that was a pretty happy accident I guess. Nice!
This book talks about the importance of eating real food and having a nightly meal-time get together, plus the importance of buying locally produced food as much as possible - to save on fuel and to benefit the community, the country and the planet. Plus it means that all your foods and veggies will taste a whole lot better! The main message is that what we choose to eat changes the type of world we live in. It is hard to argue with that.
If you are already really interested in where your food comes from, the importance of good soil and eating seasonally and organic and avoiding commercially produced meats and eggs and highly processed foods and so on, there is no new technical information here really. It covers a lot of ground for the newbie though, in a pretty easy to read way. It even has a few witty lines and jokes in.
My only issue with the book is that while the author does a great job of busting all sorts of myths about the environmental effect of eating non-local foods and the importance of food and eating in a social context, she seems quite happy to reinforce lots of other myths about the effects of food on health. Reading this book I wished the author had read a bit more widely on this topic, but then I saw 'Nourishing Traditions' listed in the references section - so maybe it wasn't about a lack of information but choosing to ignore it. Or maybe the awful book by Marion Nestle just muddied the waters too much, I am not sure. It was a real shame though and a lost opportunity by the author.
This book makes a big deal out of telling people to avoid HFCS and sugar, but the fact that eating lots of starch in foods like wheat flour and potatoes has the exact same effect on the body was ignored. The cholesterol myths and saturated fat myths are supported in some comments, as are notions of calories in, calories out and obesity being about just having too many calories. Nowhere it is even really mentioned that what these calories are made up of is quite important and that high-carb diets that are low fat leave people hungry and malnourished and can lead to insulin problems. The huge problem with eating soy products isn't mentioned and soy products are promoted in a small way,
The bit about how HFCS is so nasty and they were so glad to have avoided it completely but that mac and cheese from a packet was their emergency food just confused me. Some of the recipes also had a lot of sugar in. One recipe that had 2 cups of berries in had a whole 3/4 cup of sugar in, for example. Surely that would be so sweet as to not even be nice? The recipes also had lots of flour and pasta in. So there is a very mixed message about what is healthy and what is not and a few big contradictions. I'd eat some corn syrup over packet mac and cheese or soy milk any day!
The very brief information on supplements was also lacking in a foundation of any type of serious investigation into the topic and should be ignored. Of course it is true that we didn't take supplements thousands of years ago, but is also true that nor were our ancestors exposed to so many stressors and environmental pollutants as we are. So what was enough for them is not automatically enough for us. The more stress your body is under, and the more toxic junk you are exposed to, the more vitamin C and other nutrients you need. You also need more nutrients than food can provide if you are ill. If you aren't put under much stress and aren't ill the diet described will probably keep many people healthy, so really it is fair enough that the author doesn't recommend supplements I guess. You wont recommend what you don't need yourself and what you haven't been forced to learn about through illness. But it is not true that this diet is enough for all of us and for when damage has already been done. A good diet must always come first, and supplements can't at all make up for a crappy diet, but many of us need both supplements and a good diet to be healthy or to get our health to improve.
Some of us also need to avoid grains and legumes and nightshade vegetables for our health to improve. This isn't mentioned by the author and nor are allergy issues at all really except for a brief bit on lactose intolerance. This is fair enough, and isn't the authors area of interest or in her experience, but readers should know that this is not a complete healthy eating guide for all, at the same time. The need for a rotation diet also sits very poorly with a way of eating where you eat a ton of a different veggie each month - tricky!
This book should be enjoyed for the advice and information it gives about how what we eat can affect our community and family and so on, but ignored really when it comes to the finer points of what makes up a healthy diet - and especially of anyone that is facing illness. Better books on this topic, that would be good to read together with this book would include: Primal Body, Primal Mind: Beyond the Paleo Diet for Total Health and a Longer Life]] and maybe also Deep Nutrition: Why Your Genes Need Traditional Food plus books by Sally Fallon.
The book felt a bit long, and the first half far better edited and sharp than the last half. I could have stopped reading half-way through and got just as much out of the book. The pages long anecdotes about individual chickens or turkeys were hard to get through, as were all the end of chapter sections with black text on a grey background. I wasn't a fan of those. I didn't find the book overall too preachy though and I liked the tone.
The author understands that perfection is good to aim for but that most of us may not get that close to it when it comes to growing out own food and buying locally. But that small changes such as starting a small balcony garden, or looking out for some pastured meats or your local farmers market are important too and all add up. You don't have to go from zero to a hundred overnight, but just start one small thing now and maybe next month start another and soon you'll be doing more than you thought you could, without too much drama.
Lots of the stuff described is easier than you thinking once you have done it a few times and you can pick and choose the things which give you the most benefit for the least work too. There is no need to do all of it and devote your entire life to it, unless you really want to. Homegrown tomatoes etc. really do taste many many times better, even the smell is amazing. So it is all worth it even just for taste let alone for health.
We have mastered nightly meals of real food at my house from way back and forever, plus jam and pickle making, fruit and veg growing, sourdough bread making, kefir and yogurt making and pastured meat and egg buying...but this book had made me want to take it up another notch or so. Maybe grow a few more vegetables (in trays so there is no weeding!) and stretch the budget to get the percentage of pastured meat up a bit higher.
I'm still slightly disappointed there isn't a novel with this interesting title, but the book turned out to be pretty good luckily. It is well worth a read.
This book tells you eerything you need to know to give your dog or cat a healthier diet, in a short and easy to read format.
Raw animal foods and a small amount of veggies etc. is best, and high carbohydrate dried biscuits should be avoided; 30 - 60% carbs is way too much for cats, who need less than 5% of their diet to be carbohydrate!
This book was an interesting read on the topic of orthostatic or autonomic problems and dysautonomia. It explained some of the mechanisms of these problems well and talked about some management strategies as well, although there is very little information on treatment in the book.
The book title talks about fainting but there is also lots of information here for those of us that do not faint and instead have problems being upright and of near-syncope.
The book starts off by talking about how often syncope or near-syncope problems are written off by ignorant doctors as psychological. This is of course a massive problem, and the author discusses it in a very compassionate and sensible way. Just because the cause of symptoms doesn't show up on basic physical exam or with basic blood tests, it does not mean it is psychosomatic - it may just indicate that more sophisticated testing is required.
The author explains that psychological causes of syncope or near-syncope can easily be ruled out through tilt table testing and similar. Those without autonomic problems do not have the expected blood pressure or pulse changes during the test, and those who do have autonomic problems, do. Accusing patients of 'faking' just because you have not taken the time to educate yourself as a doctor, and to learn about how to properly test for these diseases is just not good enough! Misdiagnosing patients with POTS or NMH as having 'anxiety or panic issues' is also nowhere near good enough.
These diseases don't have a 'sexy' reputation or very much media attention but they affect so many of us and desperately need to become more well known by our doctors.
The information on what determines blood pressure, what causes and what worsens low blood volume and how adrenaline surges affect the body was useful as was the part which explained that half of POTS patients had a viral infection before onset, and that barbituates and opiates can cause orthostatic hypotension.
Reading about ways to avoid fainting such as rocking backwards and forwards on your feet, or crouching so that the blood doesn't pool in your legs so severely was fascinating. Like many POTSers I had worked out these exact strategies by myself to stop from passing out while waiting in queues etc. through trial and error. I wish so much I had read anything useful about this condition when I was first ill! It is maddening that so many of us have to each work it all out from scratch by ourselves. Many of us can avoid fainting by moving backwards and forwards, crouching or fidgeting in this way, so long as we aren't upright for too long.
The information on treatment is very brief. Low magnesium levels are mentioned as one cause of orthostatic problems yet the author doesn't even mention how essential proper magnesium levels are to everyone with any type of cardiac problem and how helpful magnesium can be in helping to mange the illness. Extra salt and water is recommended, but unrefined sea salt isn't specified, unfortunately.
The book does make it clear that the drugs commonly prescribes to treat autonomic illnesses can cause real problems in some patients. For example, Midodrine should NOT be used to treat POTS where there is insufficient blood volume to maintain a healthy blood pressure (as in M.E.), beta blockers can cause fainting, as can calcium channel blockers and ACE inhibitors, beta blockers should NOT be used and may be harmful (possibly causing congestive heart failure) for those with orthostatic hypotension. Fludrocortisone can cause low magnesium and low potassium, and may increase the risk of congestive heart failure.
Personally I would avoid all of these drugs. (I have tried Fludrocortisone and beta blockers with terrible results.) To me it makes a lot more sense to find and treat the causes of disease and of symptoms, rather than just forcing the body to do things it is too ill to do. Better to put some oil in your car if the 'no oil' light is flashing, rather than just smash the light with a hammer so you don't have to be reminded of the problem any more. That is of course just a personal opinion. Each to their own.
Far better books on treating cardiac diseases, autonomic diseases, neurological diseases and others are The Sinatra Solution: Metabolic Cardiology and Detoxify or Die by Dr Sherry Rogers, plus books on diet such as Primal Body, Primal Mind: Beyond the Paleo Diet for Total Health and a Longer Life and Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair.. Dr Sinatra refers to magnesium, ubiquinol (CoQ10), L carnitine and D ribose as the 'awesome foursome' of cardiac health. Vitamin C is also very important to cardiac health, along with enough of all the appropriate fats and oils. Dr Sherry Rogers looks at how to treat any disease by finding and dealing with the root cause. I have found both these very cutting-edge approaches as well as the books on diet immensely helpful. Again, just my opinion.
This book tells readers that all those with the diagnosis of 'CFS' that have orthostatic problems, should be evaluated for them and if appropriate, given a more correct diagnosis. The author estimates at 20% the 'CFS' patient population that has orthostatic problems and says that a more correct diagnosis is important for these patients, as 'CFS' is untreatable and orthostatic problems may be able to be treated. These statements do not go even remotely far enough when it comes to describing the harm caused by a 'CFS' misdiagnosis, (and as 'CFS' is a wastebasket diagnosis, 'CFS' is always a misdiagnosis!) but are at least a very solid start for an author that is not an expert in this field. The book also gives an okay list of the neurological and other diseases which are most commonly misdiagnosed as 'CFS.'
The book says that pre-syncope symptoms can last up to half a minute. I have felt like that for many hours each day for years, but I suppose one could say that is due more to low blood volume, and low blood pressure than actually being about to faint. It feels a lot like being on the verge of passing out though, and I wish it would only last a half minute!
(I have severe POTS as part of Myalgic Encephalomyelitis (a neurological disease similar to polio and MS caused by an enterovirus; the same family of virus which causes polio.) I have very low BP and high pulse (170 bpm +) with being upright too long or overexertion (among other issues). I'm 36 and housebound and 95% bedbound and have been so for around a decade. Because of this I am probably not a typical POTS patient? My POTS issues are part of M.E. My condition is now very very slowly improving, thankfully.)
I'd have liked the author to make it clearer in the book that the advice to tell POTS patients to slowly increase their time upright each day is NOT only inappropriate for some of us, but also downright dangerous and may possibly lead to disease progression which may not be reversible. I'm very biased though as my disease is one of those where slowly increasing activity beyond the strict limits set by the disease has devastating consequences, I do realise that this may well not apply to lots of people that have POTS but do not have M.E. Having said that, I do not see a lot of graded activity and drug treatment success stories in the POTS/Dysautonomia chat group I am in either. I wonder what percentage of patients these things really work for? I am not sure it is as high as some claim.
Overall the author does a good job simplifying the information in the book, and uses some clever analogies although some parts of the book were a bit unavoidably technical. This book is worth a read for doctors and anyone with any type of orthostatic problem.
The book gives the message that all sorts of amazing things can be done through lots of brain retraining work, but doesn't claim that it is a quick and easy cure for everything either, which I appreciated.
Some people are taking the idea of neuroplasticity and running with it and maybe going a bit too far and claiming that we can retrain our brains to be any way we want (such as choosing our sexuality), and to use it to cure completely every neurological disease. It is disturbing. But this book doesn't at all support these sorts of unreasonable notions, fortunately.
This book explains that amazing changes can be made to improve people with congenital issues, diseases or brain injuries or that wish to reverse negative learned behaviours - but that these changes take lots of hard work and also that they are limited in some cases. Recovery from brain injuries will often be partial and not total. Not all neurological function that is lost through a brain injury can be fully restored. All we can do is try our hardest and do our best.
(The idea that everyone so injured could be totally well again if they just put the time into rehabilitation worries me a little. Again, this idea is not supported in the book, I'm referring to worrying and ignorant comments made elsewhere.)
Partial recoveries are still very very exciting though and nothing to sneeze at, especially when people are very ill and disabled to begin with. It is very exciting stuff, this book.
This book would be very encouraging to read for those who have had strokes and would like to learn to walk again. The bits at the start of the book about how neuroplasticity may allow people that are blind or deaf from birth to see and to hear, were astounding to read about.
I was fascinated to read about how one can compensate for a failed vestibular system with vision, as this is something I and many other M.E. patients have done.
I couldn't help but think about this compensation in M.E. patients as I read the book. It is a natural phenomena, which is kind of fascinating to me. But it is only a partial solution - which sort of supports the notions in this book of targeted and purposeful brain retraining being so powerful I guess.
This natural brain retraining of the vestibular system works well, but leaves you in a hideous situation if you are even plunged into a totally dark environment - such as when the power goes out. You suddenly have no sense of up or down and the world spins horribly, so much so that you are too ill to crawl towards the torch or lighter that can save you.
I keep torches within reach in every room I spend time in, I have to. This problem also means many of us need to sleep with a nightlight, as your body seems to need to know up from down when you are sleeping too. I also need to make sure when I walk that nothing in the room moves, or else I feel about to fall over and lose my equilibrium for a few minutes and have to clutch at things to not fall over.
But far better all these problems than going back to when I didn't really have any sort of vastibular system and would be constantly spinning and feeling I was rolling off my flat bed, or feel I was falling backwards the whole time I was walking upright! As the women in the book said too, it is also awful always walking with your feet so wide apart for balance as well. I'm so used to it now, but it would be wonderful to one day no longer have to do so! Maybe in time, and with the ideas in this book put into use, this could happen? I'd like to think so.
Reading about how well-known these visual compensations for vestibular problems are was a bit hard going for me at times, as it made me quite annoyed and sad that so few doctors and neurologists seem to know about them and that we as patients are each treated as if this problem were unique to us, when it is so obviously not. The woman with vestibular symptoms mentioned in this book described my symptoms so well. It is a bit maddening how behind with real cutting-edge research and information so many medical professionals are.
If I can improve my health to the point of being out and about in the world again, and my vestibular function hasn't improved along with the rest of me, I'll definitely try the under-tongue vestibular re-trainer device (I forget the proper name for it used in the book!) if I can.
This book was exciting to read and gave me hope for my future and one day being able to try out some of these ideas for myself. But for right now, with a brain injury that also has had systemic effects and caused cardiac insufficiency and an inability to do anything but the most basic tasks (I'm housebound and 95% bedbound and very limited with talking and movement etc. as well), it is impossible and would result in relapse and loss of function rather than improvements. Having an ongoing disease process which means your activity level is severely restricted as well as neurological problems is a different kettle of fish to fixing neurological issues which are not ongoing, such as a stroke, say. You need to be able to put the work in, and not have a disease which is worsening for physical reasons too I guess. But hope for the future is still hope.
The parts supporting animal studies in the book made me feel quite uncomfortable. I would personally rather they had been omitted from the book as they detract from the important main message.
I also have to admit that I was a bit disappointed after reading the book and hearing so many good things said about it that it wasn't edited to a somewhat higher standard, and organised a bit better. Parts of the book were quite boring to read and it'd have been great if the book had summarised the main points in the final chapter instead of just kind of petering out. The book was well written, but could maybe have been made even better with a good edit.
All through the book I kept wondering how much more positive the results from these treatments would be if they were combined with patients being given all the nutrients their brains need to function well and to heal. Nutritional medicine is vital for anyone recovering form a brain injury or similar, the body needs to have all the basic building blocks necessary to make repairs and to function properly, no matter what other treatments are tried. Although this topic is mostly ignored in this book, there was one comment towards the end where the author said that although nutrition was not his area that a properly designed supplement regime is 'a common practice that we should all be pursuing' which is hard to argue with.
For anyone interested in this topic books such as Detoxify or Die, Eat Fat, Lose Fat: The Healthy Alternative to Trans Fats, Deep Nutrition: Why Your Genes Need Traditional Food and Primal Body, Primal Mind: Beyond the Paleo Diet for Total Health and a Longer Life and others are a great start. (These books and others like them have let me very slowly start to improve my own health, FWIW.)
Overall this book is a fascinating and engaging read, especially if you are facing a neurological disease or other neurological problem. I'd highly recommend checking to see if your library has a copy. The books on neurological case studies by Oliver Sacks are also a very interesting read if you have any type of brain injury.
In a nutshell, Monsanto has immense power and is accountable to no-one. They have exposed us all to PCBs, herbicides, dioxins and bovine growth hormones while being fully aware of the harmfulness of these substances. It's profit at any price.
As one quote in the book says, Monsanto is, 'A calmly arrogant company heedlessly profiting from the suffering of victims and the destruction of ecosystems.'
Monsanto knew that PCBs were harmful way back in 1937. They have falsified studies and concealed the evidence which didn't suit their bottom line, and the sold-out FDA and EPA lend them an aura of respectability that most people accept at face value, and so their destruction of our environment and our health continues unabated.
We can't say we didn't know with the information in this book so clearly presented and we must try to stop (somehow) Monsanto getting control of our seeds and so our entire food supply as is their current completely terrifying aim. This just can't be allowed to happen.
For information on how to undo some of the damage caused by pesticides, PCBs, dioxins and other toxic compounds (which underlie so many diseases) I also recommend the excellent book Detoxify or Die by Dr Sherry Rogers. Equally important is avoiding contaminated and GMO foods (especially growth hormone containing milk) as much as possible.
This book is very well done and is so needed. I hope this book is as widely read as it deserves to be. Finally some real investigative journalism - such a rare thing these days. Thank goodness for books, and libraries!
"This book charts the ways in which the ideas of a 19th Century neurologist became enshrined in the thinking of modern neuropsychiatry. It looks at how the diagnosis of hysteria and conversion disorder was revitalised by a group of like-minded physicians under the terms of "functional weakness" and "functional neurological deficit" in order to "develop constructive ways of talking with patients". Overton claims this approach has fundamentally failed and the often hilarious jibes he makes at some sectors of the medical profession only highlight further the need for doctors to listen to their patients."
Comments: Simon Overton is a fellow advocate that I communicate with regularly.
Simon was kind enough to ask me to write the forward for this book.
An exscept from the forward text:
"Substantial medical evidence spanning many decades continues to be ignored by those in positions of power who are abusing that power to further their own vested interests. Once an idea takes root in the scientific community it is not reason but the ability to gather kudos and grab research funding that informs dominant thinking. These groups and individuals are helped immeasurably by the creation of bogus disease categories, categories such as 'Chronic Fatigue Syndrome' and other unscientific concepts such as somatisation disorder, functional weakness, conversion disorder, hysteria, and so on.
Despite an utter lack of scientific legitimacy and the enormous costs to the many patients involved and to the community at large, these massive medical frauds have continued in perpetuity almost entirely unchallenged by the world’s media, human rights groups, and governments. It is a worldwide disgrace and one of the biggest scandals in the history of medicine.
How much more extreme do the suffering and abuse caused by these malign scams have to be? How many more very ill patients have to be denied even basic medical care? How many more hundreds of thousands of children and adults worldwide have to be left severely disabled or dead through inappropriate treatment?
Simon Overton is to be congratulated for creating such a timely, intelligent and compelling book on this important topic. More uncompromising educational efforts like this one must be produced if change is ever to occur. The fox has been left in charge of the hen house for far too long already. Knowledge is power.
May the day soon come when such books (and other advocacy projects) are no longer needed, and when patients can rely on something as simple as treatment based on legitimate scientific evidence and on the reality of their pathology – rather than being subjected to various self-serving and illogical pseudo-scientific ‘theories’. Such ideas are extremely unlikely to help any of the patient groups involved to regain their health."
I highly recommend this book. The chapter which deals with the case of Ean Proctor in particular is a must-read for anyone involved in this field of medicine.
Simon Overton has releases two short films to promote his book:
Patient Struck off following GP's Blunder
A disabled patient has been struck off from his doctor's surgery following a blunder by his GP. Simon Overton from Little Clifton nr Workington, Cumbria, discovered that his GP had made a serious error on his medical records. Rather than entering "abnormal somatic nerve function" following a letter from one of his consultants, Dr. Sarah Goodman entered "somatoform autonomic dysfunction". Mr. Overton was seriously concerned as his consultant Dr. Yiannakou had indicated a physical condition for which he was offered ground breaking surgery on his spine. "somatoform autonomic dysfunction" however is a psychiatric diagnosis. Mr. Overton complained to the surgery who initially claimed the mistake was an "administrative error by one of our administrative staff". When Mr. Overton asked for the name of the secretary who had made the mistake he was told it was his own GP Dr. Sarah Goodman a junior partner at Derwent House Surgery (lucratively trading as Mason & Partner). The surgery told Mr. Overton that Dr. Goodman took "full responsibility for the error".
Mr. Overton asked to meet to resolve the matter stressing that he had found Dr. Goodman to be excellent and was prepared to forgive and forget. Mr. Overton was astonished to discover he was met with threats and intimidation by one of the senior partners Dr. David Clarkson. He was threatened that he would be "struck off" if he continued to be "unhappy". Mr. Overton asked for a time when he could meet with Dr. Goodman and her secretary to resolve the matter only to be told by Dr. Clarkson that he had been deregistered.
Under the latest GP contracts doctors have no legal obligation to actually treat a patient. Concerns have been raised before that doctors in rural practices would use this legislation to rid themselves of patients who complained. Patients have no right of appeal. It would appear that Dr. David Clarkson is more than happy to use this loophole rather than following GMC (General Medical Council) Guidelines and attempting to resolve the situation by talking to the patient. Mr. Overton has been advised to report the matter to the GMC who wish to contact Dr. Goodman and Dr. Clarkson's employers about the matter. In the meantime Mr. Overton is left without access to critical medical care.
ALL CORRESPONDENCE IN RELATION TO THE ABOVE MATTER IS AVAILABLE FOR VIEWING AND CAN BE E-MAILED.
tel: 01900 66005 (after 4:30pm)
Strike off "unhappy" patients? The actions of Cumbrian GP Dr. David Clarkson have been condemned as "ridiculous" by Simon Lawrence chairman of leading UK patient charity (the 25% group). Mr. Lawrence spoke out following Derwent House Surgery's decision to deregister a patient from their surgery following a complaint over a serious error by a junior partner at the surgery. Click on the link to read about the North Face of the Eiger Skydive on 31/07/2009 by Simon Overton to raise money for MERGE.
Click on the link to read about the North Face of the Eiger Skydive on 31/07/2009 by Simon Overton to raise money for MERGE.
Interesting reading by all accounts, which also relates to MS and ME to some extent. Recommended, but readers are reminded that when Yasko talks about 'CFS' it is very hard to say how much what she says is about M.E. She is certainly clearly not talking completely about M.E. however, and the stories of recovery of 'CFS' patients ...should in no way to be taken to mean that she is curing M.E.
This protocol may HELP M.E. however, although there is no evidence to support this hypothesis as yet. M.E. patients may also react badly to this protocol in a far more severe way than 'CFS' patients.
If only Yasko has been the champion and advocate for M.E. patients she has been for those with autism. But sadly she supports the deeply flawed 'CFS' construct, which makes working out how much of what she is saying relates to M.E. very tricky.
Much of the information in this book is available online. Some of the information in this book is included in: Treating M.E. - The Basics
'Fast Food Nation: The Dark Side of the All-American Meal (2001) is a book by investigative journalist Eric Schlosser that examines the local and global influence of the United States fast food industry. First serialized by Rolling Stone in 1999, the book has drawn comparisons to Upton Sinclair's classic "muckraking" novel, The Jungle.'
Comment: The way M.E. sufferers are denied basic medical care and often even any compassion in our society today has nothing to do supposed opposing medical views on whether M.E. is psychological or physiological and everything to do with vested political and financial interests being allowed to completely take charge of what should be an entirely medical issue.
(For the record, there is ample evidence M.E. is an organic neurological illness and no evidence at all exists which shows otherwise – the psychological or behavioural theories of M.E. have been shown to be IMPOSSIBLE medically. They can and do only exist for political and financial reasons.)
The subsuming of the distinct neurological disease M.E. under various categories of ‘unexplained fatigue’ or CFS exist purely to serve the interests of various extremely powerful corporations, and government departments. For those that find this hard to believe, and who would argue that: (1) corporations in ‘civilised’ countries would not be so completely amoral or unethical (2) corporations would not and could not cause this much harm to so many people merely to make more money (3) our governments (and legal system) would not let these corporations so easily get away with harming and even killing so many people – then this book is something you NEED to read!
In ‘Fast Food Nation’ of course the corporations involved are not the same as the corporations involved in M.E. (eg. the health insurance industry) but this makes little difference as the essential ‘personality’ of these different corporations is EXACTLY the same. (They are completely uninterested in morals, ethics or human rights and are purely driven by ‘efficiency’ and profit).
The recent documentary ‘The Corporation’ also makes these same points very well and is also highly recommended.
‘Fast Food Nation’ is also now available as a film, a fictionalised version of the book (not a documentary).
This book is available from Amazon.
Quotes: The history of the twentieth century was dominated by the struggle against totalitarian systems of state power. The great challenge now facing countries throughout the world is how to find a proper balance between the efficiency and the amorality of the market. Over the past twenty years the US has swung too far in one direction, weakening the regulations that safeguard workers, consumers, and the environment. An economic system promising freedom has too often become a means of denying it, as the narrow dictates of the market gain precedence over more important democratic values. p261
The profits of the fast food chains have been made possible by losses imposed on the rest of society. p261.
The real power of the American consumer has not yet been unleashed. A good boycott, a refusal to buy, can speak much louder than words. Sometimes the most irresistible force is the most mundane. p269.
Review coming soon.
Not an essential book, but one or two interesting comments which relate to M.E. and the links bstween M.E. and polio.
"Here are the stories of seven diseases that altered forever the course of human history: smallpox, leprosy, plague, tuberculosis, malaria, cholera and AIDS."
Comments: To see the ways in which other illnesses have been treated and dealt with by government and society and to compare that with the ways ME has been dealt with is just fascinating.
For example, in 1900 in the US there was an outbreak of plague in a booming seaport town (California) and with plague came the sensible calls for quarantine to stop its spread. But it never happened. Business leaders, aware that huge sums of money were to be lost if they were unable to operate for such a long period of time, either refused to acknowledge the epidemic at all or else they claimed that it was merely a disease confined to the Chinese - as by mere chance the first plague victim happened to be Chinese. The medical authorities accordingly took action against the Chinese and there was no quarantine. Meanwhile all but one of the city’s newspapers refused to print news of plague. The governor declared, to protect business interests, that there was no plague. Despite there being very good evidence that indeed, plague was rampant, he then fired all the medical authorities who dared to disagree with his warped views. He even proclaimed that it should be made a felony to report plague in the town.
(Ring any bells re ME?)
The book also talks about how medicine began to shift from valuing careful observation of patients and their symptoms to doctors not seeing or believing anything that was not written in a book no matter what they saw. "For instance, although, unlike most Greek anatomists, medieval anatomists, medieval physicians dissected dead bodies, and therefore had the opportunity to correct some big mistakes in the Greek books on anatomy, instead they had the Greek books on anatomy read out loud while they dissected, and tried to describe it the way the Greeks believed it to be"
(But of course that could never happen nowadays….)
It also talks about how with a slow moving disease that sometimes improves for periods of time all on its own, how many different ‘treatments’ come to be considered useful for the condition when in reality it is all just coincidence. This irritating phenomenon is not just particular to ME!
Society refusing to accept a new illness is not at all a phenomenon unique to ME either, indeed in some ways we have been dealt with far less harshly than some sufferers of previous outbreaks of other illnesses have been. Tens of thousands of innocent Jewish people have been tortured and burned alive because they were blamed for causing plague (which was really just an excuse to escalate already existing discrimination and persecution) and people with Leprosy (Hanson’s disease) have been buried alive – these are just two examples of many. It makes it feel so much less personal somehow to know that FOR CENTURIES awful things have been done to people who were unlucky enough to become ill with the ‘wrong’ illnesses.
Readability: High. There is just enough detail to get a basic overview of all seven diseases.
Any stupid bits? No, and it also has some fascinating myth-busting facts about Leprosy, now known as Hanson’s disease. It tells about how 90% of people could not get it if they tried and the other 10% would have to live with someone with the disease for years to even have the chance of getting it!! Leprosy (Hanson’s) is one of the very least contagious and least deadly illnesses there is, yet people with leprosy were known as ‘untouchables’ and were often shunned if not actively attacked. Most of this happened merely because there was an error in translation in a religious text, which meant that the word Leprosy and the word sin were confused, and so Leprosy was seen as a sign of sin rather than of disease. People with Leprosy have even buried alive just for having the illness. If only society had learned form this mistake…
The only bad bit in this book is that it doesn’t include ME as it should.
Rating: A really interesting read to give you perhaps more insight into how ME has been dealt with by our society. There are many books however, which give overviews of infections illnesses throughout history that are possibly every bit as good as this one. Get whichever one/s your local library stocks! This book is just one example.
Quote: "On most days, we go about our business not thinking about our body, merely using it to get where we want to go. But when we get sick we can think of nothing but our aching head or upset stomach. We feel at the mercy of forces beyond our control. Infectious diseases have another troubling aspect: sometimes the disease comes to us from another person. This can turn the fear of disease into fear of one another. It is in this response to fear that humans have been both incredibly brave and incredibly cruel."
24 case studies of neurological illnesses and oddities as told by the neurologist Oliver Sacks.
Comments: What I like most about this book is the way that Sacks relates to his patients. He doesn’t immediately accept the most obvious and superficial answers but is prepared to go deeper. He realises, for example, that if someone has had neurological deficits for a period of years then of course they will not be so obvious as it is human nature to find ways to compensate for these losses - something not many doctors seem to be able to understand. If only we could all have doctors this sensible and open minded! Doctors who actually take time to examine their patient before they decide what’s wrong with them! (What a deliciously novel idea!)
But it’s more than just this image of a caring doctor that appeals in this book, it’s also that some of the neurological problems described are part of ME as well but you just can’t find much information on them at all in any ME books. I’m talking about the aphasia’s (inability to understand speech), the vestibular problems, the proprioception problems, the facial agnosia (not being able to recognize faces) and the short-term memory loss.
My Aphasia is only intermittent and not permanent like some of the unfortunate people in this book, but it was fascinating to hear about how even they can still actually understand many things people say to them because – not all communication is verbal! Even though they couldn’t understand a word of what was being said, their friends and family often didn’t even know they had a problem as they compensated by reading the other forms of communication so well.
Knowing about how people deal with the extremes of these symptoms really does give you insights into what is actually happening with the brain and how it can compensate for these losses to a certain extent and it makes clear some of the ways you are coping and compensating maybe while not even being aware of it. Knowing and understanding more about your symptoms really does let you cope and deal with them better too. If you have some of these neurological problems you’ll see so much to relate to in this book and be left in no doubt as to the neurological nature of ME, it’s all there in black and white.
Quote: And society lacks words, and sympathy, for such states. The blind at least are treated with solicitude – we can imagine their state, and we treat them accordingly. But when Christina, painfully, clumsily, mounts a bus, she receives nothing but uncomprehending and angry snarls: "What’s wrong with you lady? Are you blind – or blind-drunk?" What can she answer – "I have no proprioception"? The lack of social support and sympathy is an additional trial – disabled, but with the nature of her disability not clear – she is not, after all, manifestly blind or paralyzed, manifestly anything – she tends to be treated as a phoney or a fool. This is what happens to those with disorders of the hidden senses (it also happens to patients who have vestibular impairment, or who have been labyrinthectomised)
An Anthropologist On Mars : Seven Paradoxical Tales by Oliver Sacks
This book is much the same as "The man who mistook his wife for a hat" except there are fewer case studies. Get this one only if you just really enjoyed reading the previous one, it doesn’t have anywhere near as much relevance to ME as that one does but is still a good read if you enjoy the way Sacks relates to his patients etc.
"A comprehensive manual of mediation and related topics, written by one of the first Western spiritual masters trained in the East."
I am severely ill with a disease called M.E. and have been housebound and bedbound for years now even though I am only in my early 30s. To me the title of the book seemed apt! It got my attention at least anyway, and seemed promising.
I wasn't disappointed. This book really changed the way I look at things.
Of course it can't completely erase the awfulness of living with something like M.E. but the idea that you can't control what happens to you only your reaction to it is a powerful one nevertheless. When you are very severely ill mediating becomes impossible (despite what this book says about it!) but the ideas from the book I still find helpful even though I can't actually meditate right now - the principles still hold true and I use them daily to cope with M.E. and everything else. It helps significantly.
I think the title says it all, when you have no good reason to be happy - read this book!
This is the best meditation book I know of and the free meditation CD is excellent.
The book is written with warmth and humour as well.
[Update: I wrote this review years ago and I have now improved to the point where I can sometimes meditate. This CD is one of my favourites and I find the voice very soothing and the content is also good and unlike many other meditation CDs I have. The part where you look at how you really feel about those closest to you has given me several valuable insights. I also appreciate having a mellow music only track to listen to for when I find the voice and music together too mentally stimulating and overwhelming.)
"We can cultivate the strength that leads us to the freedom to choose how we react. If someone criticises you, there is a range of responses you can have. You might feel crushed and go to bed for a week, or you might shrug it off as nothing. You might consider the other person and graciously put it down to a cranky mood or a `bad hair day' and forgive the person. You might dismiss it by asking yourself: "Why should I listen to her?" When someone whose opinion you value criticises you, you probably feel quite hurt. However if a two-year-old criticises you, you are not affected. Our reaction is everything."
This is a really innovative book designed to in a way reprogram you into not enjoying cigarettes any more so that giving them up is easy to do.
It's kind of hard to explain and it's like no other quit smoking thing I've ever read. In fact it tells you why most quit smoking books and advertisements actually make you want to smoke more! (I know they definitely had that effect on me.)
The book is very well written and easy to read, and has lots of repetition so you don't have to work hard to remember what he's saying all the time. It's really drummed into you which is helpful.
This book is a must-have if you smoke and wish you didn't. I never thought I'd not be a day-in-day-out smoker and it's been 9 years now and it actually was easy believe it or not. I smoked for 12 years (although not very heavily at around 12 or so a day) and thought I always would, I enjoyed it so much.
If you aren't sure, maybe you could get a copy at your local library for free to really make trying this a risk free trial?
Don't waste money on nicotine gum or patches that just don't help. Buy this book instead.
This is THE book for those with a rational mind that want to read about a clever and logic based approach to quitting. It is not in the least condescending and treats the reader like an intelligent individual.
This is a book written by someone that has lived with a horrific chronic illness and really knows what she is talking about whne it comes to offering advice to others in similar situations.
This book is great if you have a somewhat relapsing and remitting disease. But I must say I found very very little here for coping with very severely disabling disease with no breaks! The type that is only rarely fatal, but is very disabling for years on end.
No one disease type is any worse than another, but the way one lives with a disease that is scarily life-threatening now and then but sometimes leaves you pretty much well for years at a time (as was the case for the author) is very different to some extent to how ones copes with a disease that is very severe and disabling to the point of making a person bedbound, housebound and almost unable to speak or read or write at all and so on.
I don't even remotely envy the author this type of disease, not at all, her experiences were really horrifying to read about. One cannot compare differnet types of diseases, horrific is just horrific.
I don't mean all this even as a criticism of the book really, as I am sure this book is suitable for many poeple and it is very engaging. Perhaps I am too picky but I just want to add this comment about it not fitting some disease types as well as others for the benefit of readers such as myself who will not get as much out of this book as some others might and may be somewhat disappointed with it. Horses for courses!
This book seems pretty great overall though. It contains much more than the usual superfical and commonly given advice. The author clearly knows this topic well and is passionate about the topic, and writes well.
(A note to my fellow M.E. patients: This book described a very different illness experience to severe M.E. so much of what was said wasn't relevent. For example, the author faced life and death medical emergencies now and then, but then was almost perfectly well for years. This is so different to what M.E. is like. This is a high quality book just perhaps not suited to M.E. patients and severe M.E. patients.)
This book was very good and seemed to offer lots of useful advice but it seemed to be aimed at those with a certain type of disease pattern, perhaps the type which the authors were most familiar with. (Which is fair enough!)
This book is great, probably, if you have a non-severe and/or relapsing and remitting disease. But I found very little here for coping with very severe disease with no breaks!
The book very much asssumes throughout that patients will have periods of illness and then periods of wellness, or at least periods of being slightly less unwell.
This just does not apply to Myalgic Encepahlomyelitis, and especially severe M.E. - nor to many other diseases I am sure. As such for those of us who fit this description, much of the advice in the book is inappropriate and can't be used and is also slightly depressing. (To read a book which assumes you'll have better health periods now and then, when this isn't the case and hasn't been for many years can make you feel a bit sad.)
The problem of being bedbound, housebound or unable to speak for long periods, or write or have visitors, is also not mentioned at all.
I don't mean all this even as a criticism of the book really, as I am sure this book is suitable for many poeple and the authors had to write what they knew. Also, when a book has 'invisible illness'in the title, I suppose this does to some extent suggest it covers diseases which do not leave you obviously visibly ill such as bedbound or housebound. That would be a very fair point as well of course. (Although many other diseases the book discusses are called invisible when really the patients do look ill, perhaps just not 'ill enough' for how disabled they are for some critical bystanders!)
But I just want to add this comment about it not fitting all disease types as well for the benefit of readers such as myself who will not get as much out of this book as some others might. Horses for courses!
This book seems great for those who do fit these disease types though. It contains much more than the usual superfical and commonly given advice. The authors clearly know this topic well and are passionate about the topic.
The chapter in this book on 'CFS' is appalling. It denigrates Cheney and others for not seeing how 'obvious' it supposedly was that 'CFS' was entirely a problem caused entirely or almost entirely by mould.
Of course some patients misdiagnosed with 'CFS' have mould-related diseases, but to say the main cause of 'CFS' misdiagnosed disease is mould, or that the outbreaks of M.E. were caused by mould is just utterly ridiculous. This theory is contradicted by a mountain of factual evidence compiled over 70 years and by genuine M.E. experts. This book is not written by an M.E. expert.
Yes, M.E. patients can often react badly to mould as well as to some chemicals, and extremes of temperature and drugs and so on. And the same is true of some patients misdiagnosed as 'CFS' that have non-M.E. diseases. But this is one symptom of these diseases, which is very different from saying it is the sole cause or that the illness could be cured merely by removal of mould in the environment.
For a start, we know that M.E. and 'CFS' are not the same and that M.E. occurs in epidemic and sporadic form and is causes by a virus with a 4 - 7 day incubation period. None of the facts fit mould causation.
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.
Mould taxes or stresses the system as do excessive environmental chemcial exposures, overexertion and lack of rest, food allergies, antibiotics and other drugs and many other things. These factors can all play a role in causing illness or predisposing one to different viruses and other issues. They are part of the 'total load.'
The chapter on 'CFS' was so self aggrandising it was hard to read. It tried to paint the author as a genius that saw things that nobody else saw. But he has his facts completely and utterly wrong and denigrated unfairly Dr Cheney, a man that knows far more about M.E. and the cardiac insufficiency it causes than the author of this book.
This book could easily cause harm by convincing readers that anyone who has M.E. or a 'CFS' misdiagnosis can be cured by mere mould removal.
This book is not recommended, unless you genuinely do have a mould related illness (it may well be a high quality book in that context) and you ignore totally the chapter on 'CFS.' It is such a shame the auther had to so extremely overstate the case for mould causing so many diseases which we know have other causes. Mould IS an issue if you are ill, but it is not true that it is the number one causative issue for everyone. It is just one part of the mix.
Cabot claims in the intro to her book that it can ‘cure’ Chronic Fatigue Syndrome. I emailed her about this and pointed out that 'CFS' was not something that diet alone could possibly cure and could she please take that statement out of the next reprinting of her book (please!) and she (or someone from her company) emailed back saying very condescendingly that actually I was wrong and that they really were ‘curing’ people with the diet and that I should try it myself. Please don’t give this woman any of your money by buying her book!!! The implication that everyone (mis)diagnosed with 'CFS' can be cured by dietary changes is ignorant and potentially very harmful, and may lead to inappropriate expectations, treatment and even serious abuse.