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.