A review of M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome by Dr K.N. Hng
Very rarely do you pick up a book that is so gripping, so moving, so heart-rending you cannot put it down; Dr Hng's book is one of those.
Not only that, in its layout and formatting it is also particularly ME friendly. Much, much respect to Dr Hng for that!
This story of senior doctor, on the verge of becoming a Consultant, yet struck down by ME could so easily be made into a prime TV drama; that’s what I kept thinking!
Wouldn’t it be great if it was?
Wouldn’t it be great if it was?
I can understand why Dr Hng is on a mission to get her book to every GP in the land, it is to teach them that ME is a physical not a psychological illness, that is the book’s main message.
I am certain this book will deeply touch the hearts of fellow doctors.
A gifted writer she shares intimately her great struggle to keep going, except with ME you cannot keep going, you cannot think yourself well, though God knows, she tried!
Her awful experience of a body that no longer works, the hair that she no longer has the capacity to wash, the neighbours to whom she has become a stranger, the struggle to care for two children who she is a loving Mum to.
Much of this is very familiar to me, from my wife's heartbreak experience with Very Severe ME, so it deeply resonates. Dr Hng's commitment to her creativity particularly touched me; like her, music is my lifeline as a full time carer.
Tragically for my fellow song writer, Linda, my wife, her guitar lies untouched all these decades. My wife and I have experienced 25 years of Very Severe ME together, in comparison Dr Hng's experience is relatively brief, though it will not feel like it. Not surprisingly then, this book does not plummet the worst depths of ME.
There is little discussion of prognosis, causes or very much at all on the full symptom experience of ME, neither does it offer any insight into the possible cause of Dr Hng's ME, was it an enterovirus perhaps or some other unidentified cause? There is, sadly, no reference to the 25% ME Group.
A graphic illustration of the personal experience of someone going through the transition period from healthy to ill, with ME, the book does a superb job of illustrating the incredibly difficult process of knowing when to stop and rest alongside the many problems with the ‘just keep pushing yourself’ attitude which is entrenched in society and especially dominant in Medical training. It is so moving when a Clinician assures Dr Hng that just because you are crying, it does not mean you are depressed.
How terribly hard it is to realise how seriously ill you are at first and just how much worse it can get! This book is a record of the beginning of an incredibly long illness that can go on for decades and horrifyingly can for many, may intensify, as new symptoms arise or current symptoms become more extreme and are unimaginable until experienced.
One of the most telling features of the book is how Dr Hng was unable to diagnose her own ME: what a stark testament to the almost total lack of education in ME that doctor’s receive.
I was hoping to discover any professional insights she might have shared, regarding the underlying physiology: in ME there are so many hidden, difficult to identify and recognise symptoms, which lurk in the feelings of “exhaustion” or that term given to Dr Hng to describe escaping from paralysis following sleep, ‘ Slow Start’.
“Slow start” seems to us a particularly insidious term in context, one typical of a health service bent on limiting and under-describing the terrible reality of ME. My wife continually paralysed on a daily basis would presumably be forever stuck in a ‘slow start’ , yet in reality, as we have found out through great effort and research, it is her shifting Potassium levels that are continually paralysing her.
More discussion on the different levels of ME would be welcome in any future edition, alongside system dysfunction, prognosis and symptoms, especially as a book by a doctor for fellow doctors.
So many people with ME are left with a clinical diagnoses which is really only guess work at best, when so much is left not investigated and clinicians, in general, do not have the required knowledge; Dr Hng illustrates this point so well.
Dr Nigel Speight wisely points out in the book how much education is required in the Health Service regarding the true nature of this devastating illness.
Dr Hng’s observation that young people up and down the country are house and bed bound, is tragically true, but it is not just the young who are house and bed bound. People of all ages are struck down by ME. My wife has been severely ill for 26 years now. Many have been ill even longer. The suffering does nor get any easier to bear in a system that offers little or no understanding or appropriate input.
The section on activity is excellent but there is no mention of Graded Activity Management (GAT), unfortunately, for Severe ME, which is equally insidious. CBT and GET definitely need withdrawing but equally so does GAT, based on elements of CBT and GET.
The entire psychosocial attitude in society and health provision needs revoking, not just CBT and GET. A new biomedical pathway urgently needs developing.
None of this detracts from what is superb and compelling read; that, I am sure, is the author’s driving intention. This wonderful, this beautiful book about ME, by a doctor, written straight from the heart, cannot fail to change hearts and minds.
As an introduction to ME, I highly recommend it.
Greg Crowhurst September 2018
Dr Hng has also prepared an excellent handout, based on the book. The focus is on education - getting the basic ideas across with pointers to where to go for more.