Living with ME and Chronic Fatigue Syndrome

by Dr Gerald Coakley, Beverly Knops

Chronic fatigue conditions are some of the most frustrating, life-altering and stigmatized illnesses, so why are they still so poorly understood?

ME/CFS affects roughly 17 million people worldwide. Medicalscience still cannot explain why some people get chronic fatigue syndromes and, distressingly, there are few effective treatments. While many people with ME/CFS are able to live a fairly normal life, a significant minority have symptoms so severe that they are confined to their house, or even their bed, and suicide rates are well above the national average.

Living with ME and Chronic Fatigue Syndrome, by consultant rheumatologist Dr Gerald Coakley and occupational therapist Beverly Knops, is a much-needed, evidence-based guide for people struggling with ME/CFS - as well as their friends and family - that provides practical information and accessible advice on how to manage and live with this challenging condition, at all stages of severity. It will

- The causes and management options for ME/CFS
- The impact of the condition on work, education and emotional wellbeing
- The importance of a balanced, nutritious diet in managing your symptoms
- Post-Viral Fatigue Syndrome (PVFS) and other fatigue-related syndromes
- Advice for carers and questions to ask your doctor
- Life after ME/CFS

This essential, concise book, and its empowering patient stories of hope, will equip readers with the knowledge, strategies and support to navigate and manage this challenging condition.

Genres: Health, Nonfiction

225 pages, Kindle Edition

Published September 22, 2022

Reviews

[xenia · Rating 3 out of 5]

It's fine. Solid book on chronic fatigue that doesn't waste your time. Dispells the many myths associated with cures, and ties their proliferation to the exploitation of desperate people by snake oil profiteers. Explores various theories on the cause of chronic fatigue; notes that there is likely no single cause (like with depression). Simple tips on pacing, nutrition, symptom management, and self-defeating cycles.

Has no disability justice angle, whatsoever, which is to be expected from a book written by medical professionals. While it's, for the most part, deeply validating of patients' experiences, it also states that there is no such thing as medical gaslighting. This is simply not true (see the experience of long COVID patients who were denied medical care, despite their life threatening symptoms, and told that such symptoms were psychological). Gerard and Beverly themselves say that chronic fatigue is not well known, even in the medical community, so many doctors don't understand their patients' concerns, and point them in the wrong direction. There may be no malice involved, but that doesn't mean such patients haven't been dismissed or misled. And, from personal experience with mental illness, there are plenty of medical professionals who truly don't care about you and just want you out of the way, because they consider your illness 'not real' compared to a broken limb or failing organ.

Gerard and Beverly similarly don't understand the economic precarity tied to disability. They advise that patients be honest with their employers about their condition, so that they can work out a solution together. Sure, some employers may care, but plenty will simply not hire you, because you'll impact their profit margins. There are risks to outing yourself as physically or mentally unwell that are not discussed here, because no patient voices are included (except right at the end, and these are all success stories).

Lastly, their only advice for therapy is CBT. Come on, there are so many other modalities worth exploring, like somatic therapy, emotion focused therapy, and narrative therapy. There's more to a person's life than just the management of cognitive distortions. Their whole worldview has been upended.

Props for being an empathetic, hopeful, and scientifically rigorous book on chronic fatigue, but it should definitely be supplemented with disability justice, crip theory, radical mental health, and neurodiversity literature (a lot of the same struggles are faced by people physically and mentally disabled, especially in regards to work and stigma).

[Maelle · Rating 3 out of 5]

This is a really difficult one to rate as someone with ME and has already researched their condition. I'm not sure I'd recommend it to someone with ME unless they've been recently diagnosed and are not well-informed on it. There are sections in this book I wish I could show to several people in my life, but it wasn't necessary for me personally.

[Jennifer · Rating 5 out of 5]

I really appreciated this handbook. Written concisely, but thoughtfully. It takes ME/CFS seriously, recognizing the clear disability and significant impairments involved, while sharing the limitations that research has presented in regards to effective treatments to date (and no cure). It doesn't dishearten though, but seeks to encourage and inspire. It presents potential tools to use to better cope and stories of those who have bettered their circumstances (though these were all cases of post-viral CFS). I knew most of the info, but I still appreciated this summary and recommend it to anyone interested in understanding more. There's a chapter on how to communicate better with loved ones, which I very much appreciated. There's reinforcement for the significance of counseling, rehab and occupational accommodations.

I certainly look forward to the day when there's more conclusive research and options, though this is some of the best so far.

[Natalie Clark · Rating 5 out of 5]

Well researched, balanced advice and different theories and interventions explored.However it is easy to read and accessible to those who are not familiar with academia but would like more scientific and depth about their condition that is lacking in the diagnostic process. Offers practical and sensitive advice. I would definitely like my close friends and family to read too to understand my issues.

[Richard Alain · Rating 1 out of 5]

Unfortunately, while this book may have been accurate relating to the diagnosis of “chronic fatigue syndrome” in the 2000s, (which was based on chronic fatigue with unexplained cause), it is woefully inadequate for the syndrome called ME/CFS today, which is based on deteriorative responses to exertion.

This book would be actively harmful to anyone who has PEM and doubly so to those who have a severe form of the disease.

[Dave B · Rating 3 out of 5]

My wife has fibromyalgia and so I regard myself as quite well read on chronic fatigue. The book would be very informative for those who have only recently discovered they have chronic fatigue or have to live with someone who has it

[Lucy Bee · Rating 5 out of 5]

Really informative, easy to digest content.

[Chels S · Rating 1 out of 5]

Perputrates the usual harmful and untrue beliefs about CFS.