Have just finished this book (audio version). Not an easy listen, Jamison is brutally honest including about the practical problems of getting food and fluids in and out of the body if you're very severe. It would be a good book to give to people who need to interact with pwME, especially with pwME who are severe or very severe, or are at risk of becoming so.
For me it was like listening to two separate accounts.
Pre-ME Jamison's way of life and values were utterly alien to me. The way he drove and pushed himself, the competitive bodybuilding and fitness world, the need to hide any sign of real or perceived weakness from others, I can't even remotely identify with any of it. Undoubtedly, Jamison would have had much the same response to my way of life and values in return. But that two people so diametrically opposite in many ways can both come down with ME just shows that all those simplistic ideas about deconditioning or personality types driving the illness don't hold water.
With-ME Jamison's experiences, by contrast, were all too familiar (up to a point, Jamison became very severe, an abyss I've only glimpsed into very briefly during exceptionally bad PEM). It was easy to identify with Jamison's difficulties in adjusting to and sort of uneasily, temporarily accepting an ever decreasing level of function, both practically and emotionally. The whole interspersed with less bad periods and the hope which invariably comes with that, only to be dashed again and again. I could relate to his slow realisation that even the best doctors can only offer limited relief, and that most doctors are nowhere near best when it comes to ME. And I recognised the mix of emotions towards carers, grief for them for what your illness is putting them through, together with enormous gratitude to them for sticking it out with you (what do severe let alone very severe pwME who don't have good carers do?!)
One thing I was wondering was what treatment Jamison would have received from doctors and some of the other people around him had he not been involved in a fatal car crash a couple of years before ME onset (which happened when he combined overtraining with EBV). With the accident he handed people an easy excuse for an anxiety/depression (mis)diagnosis on a platter. Without that accident trauma, how would people have reacted to such a hypermasculine, hyperfit young male showing symptoms of ME? No way of knowing
Anyway, if you're looking for a relaxing and pleasurable read/listen, give this book a wide birth. But do get it if you're looking for an excellent testimony of a life with ME, some of which is individual but a great deal is very generalisable.
