An insight into Dr Gerald Coakley’s new book ‘Living with ME and Chronic Fatigue Syndrome’

Chronic fatigue syndrome is a condition that affects many worldwide, and can be an incredibly bothersome and difficult illness to have to live with. Having said that though, many people learn how to effectively manage the associated symptoms of the mentally and physically affecting condition.

Here to shed some light on his newly published book, Living with ME and Chronic Fatigue Syndrome, is highly regarded and experienced consultant physician, Dr Gerald Coakley.

Tell us a bit about your new book, Living with ME and Chronic Fatigue Syndrome, including its main themes and key aspects.

Living with ME and Chronic Fatigue Syndrome starts with an overview of what we call classical ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). This is not just feeling tired all the time, but rather an intrusive condition that results in a marked reduction in many or all types of activity, including education, employment, sport, and leisure.

In particular, the defining feature of the condition is post-exertional malaise, in which a group of symptoms (such as fatigue, headaches, muscle aches, insomnia or thinking problems) increase following mental or physical exertion. We consider related syndromes including post-viral and post-infectious fatigue, fibromyalgia and hypermobility. 

We review current theories about the causes of these conditions, and give advice on self-management, medications and supplements, nutrition, and food. We also give some advice on dealing with healthcare professionals and specialist services for ME/CFS, and we finish with some examples of people living well with ME/CFS, because we think that hope is vital for people with this condition.

What was the inspiration behind your book, and were there any significant events or experiences that influenced its creation?

I became interested in ME/CFS by chance. When an elderly physician with an interest in the condition retired, his former patients looked for a new doctor to take them on.  I found many of them had been receiving regular intravenous infusions of vitamin B from this physician, and were looking for someone else to provide it for them. 

Never having heard of this treatment, I looked into it and found there was no scientific evidence to support its use.  While I was not prepared to continue providing what seemed to me to be an expensive placebo (albeit lucrative for the physician), I was intrigued by the condition and started to have more and more patients be referred to me. I find it to be a fascinating, complex, and challenging disorder.

Describe the target audience for your book, and explain why you believe they will connect with the story and its characters.

The book is mainly aimed at people with intrusive fatigue symptoms who think they may have ME/CFS, or have recently been diagnosed with the condition. The condition is difficult to understand and explain, and there is a lot of misinformation about it online and in the media. 

Both my co-author, Beverly Knops (an occupational therapist) and I (a physician and rheumatologist) have decades of experience of seeing and trying to help people with these conditions, and we wanted to create a book that is up to date, scientifically informed, fair and balanced, and realistic but hopeful.   

In your opinion, what are the distinctive features or approaches that set your book apart from others in the same genre?

We bring our professional backgrounds to the book. I have a PhD in molecular immunogenetics, so took a particular interest in reviewing the evidence for genetic, immunological, and cellular factors relating to the condition. As a rheumatologist, it made sense to bring in fibromyalgia and hypermobility, which are linked conditions.

Beverly’s background is in occupational therapy, so she brought her knowledge of rehabilitation and self-management of symptoms. While there are many people with ME/CFS in severe forms for whom medicine currently has little to offer and whose outlook is poor, we both thought it was vital to bring some optimism and hope to the discourse.

Our experience over the last two decades has shown us that hope is necessary but not sufficient for improvement or recovery to take place. Also, some people recover completely from ME/CFS, and many more learn to live well with the condition, and we think it is important to share and learn from these experiences. 

Can you share any intriguing or memorable anecdotes from your writing process or the journey of publishing this book?

My main memory is many mornings of waking up at 04.30 a.m. to start writing before my day at the hospital began!