Chronic Fatigue Syndrome (CFS) is a debilitating illness, characterised by severe exhaustion and flu-like symptoms affecting possibly 10 per cent of the UK population, for which conventional medicine currently has no cure. Now the authors, who practise at the CFS Research and Treatment Unit, University of London, have developed this new self-help guide. Via recognised CBT techniques that change our attitude and coping strategies, this approach is successful in breaking the cycle of fatigue, with a reduction in symptoms and disability in up to two-thirds of sufferers. The key features of the book improving sleep patterns; practical strategies for balancing activity and rest; dealing with blocks to recovery; stress and ways of coping; and how relatives and friends can help.
This book is based on the logic that prolonged bed rest can decrease fitness (blood volume, cardiovascular function, muscle volume etc) and can make you feel even more tired. And therefore, rest is a cause of chronic fatigue and rest, naps and sleep should be reduced in order to relieve chronic fatigue. Chronic fatigue could in fact, be caused by two days full bed rest during a viral infection, according to this book.
Whilst I agree that gradually increasing exercise can really help someone improve their energy levels - This book works on the logic that there are only negative consequences of rest, which is just plain untrue.
There are many reasons why someone with chronic fatigue can and should rest, many benefits of sleep and naps.
The ideas behind what causes and exacerbates chronic fatigue are simplistic and vague. Such as: you are probably losing sleep because of anxiety and your anxiety is caused by worrying about being ill. There is a style of cbt which is along the lines of "just stop thinking stupid stuff and you won't be mental anymore" and this book is on that level.
It seems to be for people who have no known cause of their chronic fatigue. As someone who has only just been diagnosed with a "known" cause for their fatigue, I'd say to people with no known cause for fatigue - there could be an underlying reason that your gp isn't educated in and doesn't know about and there could be very good reasons for you to rest. Due to a genetic condition, my body is working much harder during the times when I am active and so I need more rest, it's as simple as that.
One of the example 'targets' in this book suggests a student aim for an hour of rest in the evenings which seems too little even for a fit and healthy person. Resting for no more than an hour each evening would push even the healthiest person to burnout.
All in all, I wouldn't just say it's medically inaccurate and unhelpful. I'd say it shames sick people and insinuates stupidity and laziness are causes of fatigue. And doesn't really teach you how to live your life alongside this condition but instead suggests pushing through and just gradually doing more stuff. I'm really surprised this book was written by a CF sufferer and not a totally clueless GP with a victorian work ethic.
Unfortunately this book is very misguided and at odds with 2018 knowledge and understanding of the disease chronic fatigue syndrome and it conflates this specific complex multisystemic disease with the symptom of many ailments ie chronic fatigue. The Centre for Disease Control website is a good source of information on CFS.
"Try to notice what goes through your mind when you have a strong feeling, a strong reaction to something, or a change in your mood."
Although this book didn't go into the mechanisms behind Chronic Fatigue Syndrome (CFS) to the same extent that another self-help book I have read recently, Chronic Fatigue Syndrome for Dummies by Dr. Susan Lisman, I personally find the highly-structured exercises that constitute the cognitive behavioural therapy approach very helpful in making long-term situations more manageable. Cognitive behavioural therapy (CBT) is an evidence based approach, and it is helpful to know that this approach has been explicitly studied for use in patients with CFS. The book reports three studies, two conducted in the UK and one in Norway, which found improvement in two-thirds of CFS patients who were given a CBT recovery regime, compared to only a quarter of the control group. These are pretty optimistic numbers for a condition with no currently know medical cause and giving rise to subtle physiological abnormalities "This leads to symptoms similar to those experienced in a flu-like illness". Beyond this, the book covers the basics of currently proposed causes including recurrent infections, prolonged stress, boom and bust lifestyle (does this sound like me yet?), and finally perfectionist thoughts. "Perfection is a concept that doesn't fit reality." I also found it helpful that the anxiety associated with chronic and often unpredictable illness was dealt with explicitly. "expect to feel anxious" I appreciated the brief techniques for social anxiety here applied to the uncertainty of living with a chronic illness. However, other proposed contributing factors are not in line with current beliefs about CFS, reflecting the publication date of 2009. "Researchers have looked at the effect of rest in healthy people when they reduce their activities, and many similarities between healthy inactive people and people with CFS have been noted." Many CFS suffers have normal muscle tone, such as myself thanks to a long neurological exam, so this information could benefit from some specifying information. "Maybe you have received conflicting advice on how to manage your fatigue." But then again, even in 2017, medical professionals, counsellors, and employers seem able to agree on very little concerning how CFS should be managed, so this appears to be a hazard of the condition. Perhaps it is just me, but I found statements like this: "A very common factor which contributes to maintenance of CFS is reduced activity and increased rest." rather guilt-inducing. It may just be my strict Catholic upbringing, but I found this implied that I am partly responsible for my symptoms by resting during recurrent infections that caused a lot of pain and suffering. I would have been greatly helped if this was expanded upon or qualifying circumstances included. However, the CBT exercises themselves appealed to me greatly. There were clear instructions about how to carry out each one, and a sequence in which each would be useful which again minimised the breadth of the planning needed to small, manageable activities. The activity and sleep diaries, complete with headings to help identify the areas which aspects of the daily routine to pay most attention to. I think for my self-help books next year, I will invest in the sleep disorders book in this Overcoming series. The emphasis on planning in the short term and gradually increasing activity was very helpful, especially for a person with a perfectionist tendency. "include an hour for yourself each day where you do something you want to do." I really appreciated a case study of a hard-working over-stretched person suffering chronic fatigue and fitting the required therapy around inflexible work. It was an inspiration. Other helpful sections were the very brief section in Chapter 15 for friends and relatives, which was short enough that it could be presented to someone during a tea break and impart some information without being overbearing. The chapter on overcoming setbacks was also extremely helpful as someone who suffers regular acute infections which can be very disheartening after a period of solid progress. I know I will use the "downwards arrow" to identify core beliefs and assumptions about myself from my automatic thoughts which have recurred throughout the time of my illness. Overall the book was clear and concise in laying out the exercises and this gave me a considerable boost in feeling I can approach managing my own condition.
Definitely don't recommend. Claims you caused your own illness, either by doing too much and not resting, or by resting too much. Whatever you're doing, you're doing it wrong and need to do the opposite. Absurd and completely unscientific explanations of the alleged causes of physical symptoms (brain fog is caused by lack of mental stimulation due to isolating yourself on bedrest?!). Absolute nonsense. Glad I got it from the library so didn't pay money for it!
The bad: it might be because CFS is so vague in its diagnostic and in the measures that can be taken, although the book is written with great professionalism, it still seems at the end of the day you don't get much out of the book. This isn't a criticism of the authors, but of the current status quo.
The good: it's a good summary and interesting set of techniques of CFS. Very useful.
The worst possible book ever written, by possibly I mean it was painful to read and I will never recommend it to anyone, I literally suffer everyday and have for years and this book has made me more frustrated than anything I've gone through, I can't have fun when I go out with friends, I can't eat food I love without excruciating pain, I am exhausted all day everyday, I wake up several times every night, I can't sleep most days, I don't have energy to leave my house or even spent time with the people I love, I am nauseous constantly, I am in constant chronic pain and I go through hundreds of painkillers a month! And this book is worse than that. If they had the audacity to come up to me in person and say that every treatment out there just won't work except for exercise WHEN I DONT HAVE THE ENERGY TO DO MY FUCKING WASHING UP I WOULD BEAT THEM TILL THEY ARE A BLOODY FUCKINF PULP. The first chapter is good at explaining what it is but the talk of hormones and the pages saying basically that we are lazy and that our lack of exercise is causing everything wrong with us when I literally have to rest of hours after a hike and sometimes I have to lay down for hours after just doing some mundane errands. They suggest ignoring symptoms because focussing on them can make them worse but when I literally cannot stand to open my eyes outside because I am too sensitive to light or noise I don't think I can just open my eyes and just be chill with that tbh, or when my joints hurt to the point I'm limping I guess I should just man up and walk normally my bad g. Additionally there is a whole chapter on how you should just improve your sleep like that isn't a main issue to start with, we suffer with inconsistent sleep, feeling fatigued even after sleeping a doctor suggested amount, going from hypersomnia to insomnia and BEING SO EXHAUSTED I CANNOT PHYSICALLY YAWN SOMETIMES, not to mention the incredible mental energy it takes to live as well as deal with the symptoms like brain fog, inability to form sentences or make choices and the frustration and helplessness you are constantly dealing with. You would have thought better of a book that was written by someone who apparently deals with CFS patients but genuinely other doctors have discredited this book and it's fucking horrendous I will be burning it.
So, after a lot of blood work and refferals to specialists, I'm being reffered to a chronic fatigue specialist. I'm reading this book to get an idea of what to expect in terms of treatment and to see if the info 'jives' with what I'm experiencing. It's hard, when writing about such a diffuse and varied illness, to make every point relevant to everyone and it's tempting to mark the book down for that. Here is where the book earns its four stars: I went to a hot yoga class today and knew from reading this book that I may have some post exercise symptoms. Normally, this would make me feel like I had overstepped my bounds but the book tells me this is normal if I haven't exercised for a while and am attempting to do more. Mentally, this helps a lot. I'm interested in seeing what other good and helpful information I can get from this as I continue.
Definitely don't recommend. Claims you caused your own illness, either by doing too much and not resting, or by resting too much. Whatever you're doing, you're doing it wrong and need to do the opposite. Absurd and completely unscientific explanations of the alleged causes of physical symptoms (brain fog is caused by lack of mental stimulation due to isolating yourself on bedrest?!). Absolute nonsense. Glad I got it from the library so didn't pay money for it!