May is ME/CFS Awareness Month and while we advocate for awareness all year round, May is the month we try to shout that little bit louder in the hopes that our voices may be heard. Today, with that in mind, I’d like to share with you some incredible books on ME/CFS that can help broaden your understanding of this complex illness, that after all is one of the main things any of us who live with Myalgic Encephalomyelitis hope for (that and treatment and a cure of course!).
The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son – Tracie White, Ronald W. Davis
“A renowned geneticist races against time to diagnose a malady that landed at his door… A complex, well-related story of medical detective work.” –KIRKUS
The Puzzle Solver tells the story of Whitney Defoe, a very severely affected ME/CFS patient whose life is devastated by the disease. His father, Dr Ronald Davis PhD, a renowned research scientist (whose previous work helped uncover the science of DNA) changed his career path and focused his research entirely on finding the answers of ME/CFS and the hopes of a treatment for ME/CFS.
“In The Puzzle Solver, journalist Tracie White, who first wrote a viral and award-winning piece on Davis and his family in Stanford Medicine, tells his story. In gripping prose, she masterfully takes readers along on this journey with Davis to solve one of the greatest mysteries in medicine. In a piercing investigative narrative, closed doors are opened, and masked truths are exposed as Davis uncovers new proof confirming that Chronic Fatigue Syndrome is a biological disease.
At the heart of this book is a moving story that goes far beyond medicine, this is a story about how the power of love — and science — can shine light in even the darkest, most hidden, corners of the world.” -Good Reads
In the US and Australia, it is The Puzzle Solver and in the UK it has been published under a different title: Waiting For Superman.
When Force Meets Fate: A Mission to Solve an Invisible Illness – Jamison Hill.
Jamison, an ME/CFS patient and advocate tells his incredible story and fight against this disease.
“A healthy young man survives a fatal car crash only to be plagued by a mysterious illness that robs him of the ability to walk, talk, and eat solid food. When Force Meets Fate is a captivating, transcendent survival story―one that forces all of us to reckon with our own mortality and the fragility of life.” -Good Reads
“The gripping prose in this memoir describes a young man, whose life deteriorates from a healthy fitness trainer to the sudden depths of being sick and bedridden with a mysterious illness for years. Jamison’s dedication to life, however fragile, and advocacy, however impossible, have brought out this incredible story of survival.” –Stephanie Land, New York Times bestselling author of Maid: Hard Work, Low Pay, and a Mother’s Will to Survive
Supercharged Superhero – Gemma Everson
Supercharged Superhero is a wonderful book for children. Written by Gemma Everson when her husband became ill with ME/CFS, Supercharger Superhero helps explain why their children’s daddy doesn’t have the same energy supplies he once had. It is a great book for helping children understand chronic illness.
“Supercharged Superhero is a moving and true story about one little girl and her super energetic, superhero dad whose battery suddenly and unexplainably goes flat and will not fully recharge. This rhyming story shares their journey through the eyes of a child as she comes to terms with her father’s condition.”
Science, Politics, …….and ME: A health scandal in our generation – Dr Ian Gibson
To understand more about the struggles those face with ME/CFS, you need to have a greater appreciation of the political, scientific and medical scandal at play. This may help pave the way for a greater appreciation of what ME/CFS patients face daily, and that’s without considering the battle of the illness’ symptoms itself.
“Few diseases can have been so maligned by false information, so manipulated by an insidious establishment-controlled ideology, or so poorly dealt with by those holding the purse-strings for research into the disease, than Myalgic Encephalomyelitis (ME). This book examines a scandal in our generation – a scandal still being played out by corrupt, apathetic, inept or ignorant attitudes in governments and Medical Research Councils and health services…It is long past the time to treat this as a serious illness and the need for serious biomedical research. This will only come about when politicians and the media stop trivialising the illness. Science, Politics …… and ME is a book which will serve as a reference for the dark times, when patients were ill-served by the clash of interests between truths and untruths. It is also a book which comes at a time where a brighter future may be in the making for people with ME and their families.”
Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition – Erica Verllio
Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, is an up to date understanding of the history of the illness, with regards to historical outbreaks, name choices, the illness in both adults and children and a breakdown of symptoms. It follows discussion with medical professionals and receives high praise.
“Every aspect of the illness is thoroughly examined, from diagnosis to an in-depth discussion of symptoms, from traditional to alternative therapies to essential coping strategies. The new edition contains chapters for those coping with multiple chemical sensitivities and dietary restrictions, as well an expanded section on children and adolescents with CFS/ME. Chronic Fatigue Syndrome: A Treatment Guide, Second Edition, remains the most comprehensive reference guide on this disease.”
This book is extremely comprehensive and very well referenced, not only with regard to the full range of treatments that have been helpful, both alternative and pharmaceutical, but also including detailed descriptions of the history of this disorder, its definitions, diagnosis, symptoms, prognosis, mechanisms, and other aspects. All of this is done in a very readable style. I highly recommend this book.”
~Richard Van Konynenburg, Ph.D., Independent CFS/ME researcher
What Is ME/CFS?
ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is a neurological disease (as defined by the World Health Organisation) that affects multiple systems of the body..
“Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems. ME is a neurological disease according to the World Health Organization.
Susceptibility may be genetic, but the disease is triggered by infection in the majority of patients. ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is a common chronic consequence of viruses, with 10-12% of those with serious infection going on to develop the disease. An estimated 15-30 million people live with the disease worldwide.” -ME Action.
For further facts on ME/CFS please read my myth busting post:
I do hope these suggestions are helpful and if you’ve any you’d like to share any books on ME/CFS please do so in the comments below!
Take care this ME/CFS awareness month and let’s do all we can to raise awareness in ways that are safe for us 💙
If you’d like to read more about my story with ME/CFS: