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F**A
This book changed my life
I owe a debt of gratitude to the author. This book gave me the tools I needed to solve the puzzle that is (was!) my CFS/ME.The book discusses all available treatments, including diet, supplements, medications, and lifestyle. All of the material is supported by the best available data and the book is full of relevant citations.Anyone who has this condition knows it's a huge mystery. What causes it, how to live with it, and how to treat it. The author realizes that the condition isn't the same for each individual, and therefore, neither is the treatment. So she presents an incredibly comprehensive look at pretty much every legitimate treatment out there. That's the good news. The bad news is that each of us with this life-stealing syndrome will need to do the work to figure out which treatment protocol, or which combination of protocols, will work for her or him.Prior to this book, I discovered that a mostly raw, low-fat whole foods vegan diet free of gluten helped somewhat, but didn't completely eliminate my CFS. I am one of those who has a high oxidative burden and therefore needs a high level of antioxidants in my diet.I did numerous painstaking elimination diets with the hope that I could rid myself of a trigger food or two (or even ten) and be cured. What I was missing in my personal CFS puzzle was the supplements. As the author states, some people need a diet like mine, and others need a lot of meat. We are all so different.But after adding a selection of supplements suggested in the book I experienced my first REAL 100% remission and became my old self that I missed so much. I worked hard, gardened and did hours and hours of yardwork a day, and felt GREAT. I had a relapse the last couple of days because I tried to add some wheat to see if I could do this on supplements alone, but it is clearing from my system and I will now do some more tweaking of my diet to see if there is still work to be done in that area.I HIGHLY RECOMMEND this book to anyone who has CFS/ME or even fibro or who cares about someone who has it. But you will have to do some of your own detective work to figure out which protocol or combinations you need. Be methodical, and be persistent, and stay strong. If there's an answer for you, there's a good chance it's somewhere in this book. You must be willing to be your own advocate and detective, but don't give up! If I can beat this, you can too!Even though the answer is different for all of us, I will post my own plan that put me in remission in case someone finds it helpful:PUZZLE PIECE 1: DIETI am one of those who has a high oxidative burden and therefore need a high level of antioxidants in my diet. I also have a few trigger foods, particularly wheat. I can tolerate a small amount of a trigger on occasion, but more than just a taste will set me back.I eat a whole foods, low-fat, vegan, gluten-free diet. Dairy, meat, and wheat fatigue me physically, and wheat also adds brain fog. I don't eat fractionated foods. That means no added oil, even olive oil. Oil is a fraction of its source. So are things like refined grains, table sugar, etc. Basically, if I can't easily separate something from its whole source in my own kitchen (example: squeezing lime juice from a lime), then I don't eat it.I eat a small amount of fatty whole food with each meal to help ensure uptake of fat-soluble vitamins (like pumpkin seeds, flax seeds, and avocado), but I keep my overall percentage of fat from calories below 15% per day. I eat as much of my food raw as possible, about 75%, but do eat some cooked food with dinner most days, as cooking makes available some nutrients that aren't as available in the raw food (for example: lycopene in tomatoes or beta carotene in carrots or sweet potatoes). I have a whole foods, gluten free starch with most meals (quinoa, sweet potato, red potato, banana/plantain, etc) for slow release but sustained energy. Processed starches, such as white sugar or rice flour or most processed foods have just the opposite effect and cause problems with insulin and sugar spikes--a big no-no.The dietary changes also eliminated my muscle soreness and headaches (migraine quality). Completely.I also have white tea every morning as it has virtually no caffeine and a very high antioxidant level. I avoid stimulants of all kinds, particularly caffeine and chocolate.As an aside, my diet has improved other aspects of my health, including reducing my cholesterol from well over 200 to 134, reducing my BP, and reducing the inflammation in my body to the point where things I considered part of aging (like gum disease) just went away.PUZZLE PIECE 2: HORMONESI have had thyroid disease for decades, so I need supplementation. I am also peri-menopausal and on recent testing have found I have virtually no progesterone in m body. So I need to supplement progesterone. Inadequate supplementation of either thyroid hormone or progesterone result in a small increase of fatigue and a giant increase in my brain fog. My mental clarity is entirely dependent on both of these hormones. I recommend all women, regardless of age, with severe brain fog should be tested for their hormonal status, both thyroid and sex hormones. I support my family through a very cognitive job, so I need to keep the brain fog at bay to keep my home and feed my family.PUZZLE PIECE 3: SLEEP/RESTProgesterone supplementation significantly helped my sleep, especially since it eliminated night sweats. Also, I make sure I get a sufficient amount of sleep to the extent that I try most days to sleep until I wake naturally, not until an alarm goes off. Oddly, this is one of the harder things to adhere to given the way we live in our society. On the days when I do need to wake using an alarm, I use one that monitors my sleep cycles so that I wake during light sleep, not deep sleep. This is REALLY important for me otherwise my sleep is not restful. I use an app on my phone for this called Sleep Cycle-- it does not require any additional hardware.I'm not a napper, but there are days when I know I need to just stop and rest for a little while, so I try to pay attention to that as I've learned that a short rest can prevent a complete relapse.PUZZLE PIECE 4: EXERCISEI LOVE to exercise and be physical. This was a huge element of life I lost to CFS. Staying active when I'm in remission is important, and light activity when I'm in a relapse is also important, although due to my love of physical activity I have a hard time with the concept of "light" activity and on days when I could drag myself outside I always did too much when I was in a relapse.PUZZLE PIECE 5: SUPPLEMENTSThis was my final puzzle piece. The doctor who diagnosed me with CFS/ME told me she thought mine was due to a mitochondrial disorder. Basically, this means that my body was getting energy from my diet, but not really burning it in my cells (which happens in the mitochondria). Kind of like a car having a tank full of gas, but not getting enough gas to the engine to burn so that it will run properly.I took this to heart as I believed her to be correct due to my specific symptoms, and when I read this book I focused on the protocols that treated mitochondrial dysfunction. So my supplement regime includes: ribose, NADH, acetyl-carnitine, co-Q10, magnesium, B-12, selenium, and lysine.Prior to adding the supplements, I had partial remission and occasional glimpses of full remission. A hour or afternoon or once in a long while a good day. But never consistent remission to the point where I was my old energizer bunny self. The supplements, when combined with all of the other lifestyle changes, was the final key for me. And I don't think I would have found that piece without this book.PUZZLE PIECE 6: DRUGSThat same doctor prescribed ritalin for me to help with the fatigue. It was useful for days when I absolutely HAD to be functional and was in a bad relapse, but the doctor recommended it daily and used like that over time the ritalin ended up draining me more. It made me be active on all days when I just didn't have the energy (which was just about every day), and that's not a good thing as it ended up draining me more. I now avoid the ritalin for all but an emergency situation.A doctor prior to that tried to put me on anti-depressants. I don't know why most doctors can't understand that while CFS/ME has symptoms in common with depression, and there are a select number of patients who have both CFS/ME and depression, for most of us it is NOT depression and anti-depressants don't work. In fact, for me it made things worse as I was still fatigued and the meds made me feel even less normal.So that's my new life. Most people around me think it's a crazy, restrictive lifestyle, but for me it's freedom. It's freedom from the insanely debilitating fatigue and brain fog that left me alive but not really living. It's the freedom to now have CONTROL over how I feel and how much I can do. And it's the freedom of being myself again. It's a choice I gladly make every day.Again, I thank Erica Verrillo for contributing to my solution and for writing such a comprehensive and excellent book. I couldn't have done it without her.
E**K
A Helpful Start to Treating CFS/ME
Of the many problems with having CFS/ME/FMS, one of the more frustrating is the lack of treatments. Or rather, the overwhelming number of potential treatments, none of which are a sure-fire cure. Since the cause and mechanism of this illness/these illnesses (it is still a matter of debate whether Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, and Fibromyalgia are all manifestations of the same illness, or three different and distinct illnesses) is unknown (although theories abound), it is no surprise that there is no treatment either. Although, as the author points out encouragingly, it's not that nothing works, it's just that different things work for different people, and recovery is often a matter of trial, error, and blind luck. Unfortunately, though, it's not like you can just go to your doctor and ask for advice.In which case, some pointers can be helpful. This encyclopedic guide covers the history of the illness(es)--is it a new name for something that has been plaguing humanity for centuries, or is it something new in and of itself?--the hypotheses regarding the mechanisms behind it, and various treatment options and regimens that have been tried.The information provided is exhaustive, with links and citations of further sources of information, including specialist clinics, research articles, and patient websites and online forums. If you're trying to get started on finding out more about CFS/ME, then this is an excellent place to start. The information is presented in as accessible a manner as possible, and the writing is clear and engaging. That being said, the material presented is inherently dense, and reading the book straight through as I did could be rather challenging, particularly if you're experiencing brain fog or eye problems (word to the wise here!). Severely ill sufferers may wish to dip in and out of the book in small chunks, or have someone else read it through for them. However, as a reference guide to return to, the book is extremely useful.And while it's depressing to see just how little is known about this illness, and how severely it can affect people's life, it's also encouraging to see that there are a number of things that can be tried. The book covers everything from prescription drug options and even experimental drug trials you can enroll in (for a cool $24,000, paid entirely by the patient--gotta love the US medical system!) to alternative therapies such as acupressure and massage.This is particularly beneficial given the lack of good information available via regular medical channels: some of the more frustrating and upsetting sections of the book are on the vague and poorly constructed trials that have promoted the use of harmful therapies based on the recovery rates of people who most likely didn't have CFS to begin with (as the author dryly notes, recovery rates from CFS tend to be much higher in groups of people who never had CFS to begin with), as well as the shocking stories of children and adolescents forcibly taken from their families and forced to undergo harmful and in some cases fatal reconditioning therapies. While modern medicine has improved in many ways from the mystification of the dark ages and the forced institutionalization of a hundred years ago, confrontation with a chronic illness such as CFS rips the mask right off, and you realize just how much snake oil, witch doctoring, and plain old coercion are still out there. Sadly, the current emphasis on mental health seems to make things worse rather than better in this case...but that is a topic for another day. In the meantime, since you can't heal yourself with your magic mind powers, you can at least use your intelligence and critical reasoning skills to try to make things a little better, and reading this book could be a very helpful start.
M**O
Great Overview
Lots of good info and research here. Well worth the $4 download. My main qualm would be the need to read between the lines. For instance, the author goes doesn't do much to distinguish between effective therapies and hogwash. If a treatment is suspect, she might say something like 'while not recognized in the medical community many CFS suffers find it helps relieve symptoms.' Essentially what this translates to is that somebody said it worked for them, which is anecdotal, which is worthless. As there are hundreds of supplement and therapy reviews here, it would make sense to start with the ones most likely to be effective and relegate the non-doctor endorsed ones to the garbage heap.Edit: I just brought this down 1 star as it hasn't been updated to include info on MTHFR gene issues. If you have CFS, look into it. Its easy to test for and treatment is also simple.Edit: I find myself coming back to this book again and again as there is a lot of info here that isn't easily found on the internet. So I'm bumping it back up to a 4 star. How nice am I? Super nice! ;)
J**M
A must for those with IIH
Great book. Plenty of details by an expert in the field .
R**.
Bestes Buch über Chonic Fatigue Syndrome
Das ist das ausführlichste und beste Buch über CFS/ME das ich bis jetzt gelesen habe. Bin selber von der Krankheit betroffen und betreibe eine Webseite über dieses Thema. Leider nur auf englisch. Sehr zu empfehlen.
Y**P
Enlightenment on CFS Theories
Although not an easy read due to the extensive coverage of this complex subject, it is usefully compartmentalised to enable it to be used as a reference guide. This has also meant that some items are repeated (mentioned in other reviews), but I am finding, as I am reading from cover-to-cover, the repeats are a big plus - as the CFS symptoms rob me of my short-term memory!The descriptions of the proposed mechanisms for the various symptoms, with the various protocols for alleviating the symptoms have been enlightening. They cover pharmaceutical, food supplements and alternative approaches, leaving many avenues to be tried, with the research sources available for further reading via links in the bibliography sections of the electronic book. They saved a lot of sifting through potential Google searches to view the recent research results!I am about to try some of the suggestions from the book (after having checked with my GP to see if there are any contra-indications for my particular situation). In the meantime, I recommend this book for anyone wanting to catch up with recent thoughts on the subject of FM, CFS, ME. It takes effort and time to read, but importantly, it is worth it and the price is really good.
Z**A
A precious resource
This book is a virtual encyclopedia. Especially in electronic format as you can search for all ocurences in the book of any topic you want. I have used it many times to adjust my strategies and have found it very useful. The cost is unbelievably low, a small donation really! If you suffer from ME/CFS this is a must! Thanks SO MUCH to the author for this Herculean effort to create such a complete encyclopedic reference!
M**E
Ausgezeichnet
Super Buch zu dem komplexen Thema CFS/ME, aber meines Erachtens nur für (Fach)Ärzte geeignet. Räumt mit vielen Unsinn aus dem Internet auf.
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