What is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives is a must-read book for medical professionals, students, policy-makers, and all affected by myalgic encephalomyelitis (ME).
It can be bought here.
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Containing 80 first-hand accounts of the many and varied presentations of ME, this book is intended to enhance global understanding of the illness. We hope these accounts can be used as supportive evidence to illuminate the path towards future ME research and healthcare.
The book was created by an international group of writers with over 600 years of collective experience living with or caring for someone with ME. The writers understand ME and have given language to an experience that medicine has repeatedly struggled to name.
ME is a long-term, multisystem, disabling disease that prevents those who are affected from performing exertion, including even the simplest activities of daily living. Basic daily tasks like movement, reading, math, eating, hygiene, and communicating can become significantly more difficult, or in the severest cases, impossible.
If you are a clinician, medical student, researcher, or policy-maker, we offer these lived experiences as evidence that can change the trajectory of medicine. The essays illuminate gaps in healthcare, research, and policy that leave patients vulnerable. You can help close these gaps and ensure a better future for people with ME.
If you are a caregiver, family, friend, or person with ME, we invite you to read about the multisystem complexities of the illness and share this book with healthcare providers and others so that they, too, may better understand the disabling effects of ME.
Millions are waiting for the world to better understand ME. Many have not survived the wait.
What Is Myalgic Encephalomyelitis Like? will guide you through the intricacies of the illness. We hope you will join us to create positive change and improved healthcare for people with ME.
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