Lighting Up A Hidden World: CFS and ME by Author Valerie Free

This book serves as a patient advocate and an educator for all.

The onset can be fast and shocking or slow and insidious. It can happen to anyone at any age. A flu, a vaccination, or an infection can be the innocent beginnings to the potentially life-long and disabling illness called myalgic encephalomyelitis (ME), which is more commonly known as chronic fatigue syndrome (CFS) or ME/CFS in North America.

In the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by concerned doctors who were witnessing an influx of patients with a mysterious illness. Eventually the CDC labeled the condition “chronic fatigue syndrome” which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with international experts that ME/CFS is a serious, chronic, multi-system illness.

Through artwork, poetry, story-telling, and meticulous research, Lighting Up a Hidden World: CFS and ME takes readers into the fascinating, yet frightening, landscape of ME/CFS. Author Valerie Free shares her personal experiences and delivers illuminating first-hand perspectives from patients, caregivers, journalists, and medical professionals from within the global community in short easy-to-read segments. These stories reveal the disgrace, controversy, and tragedy of worldwide neglect by political and health care systems, leaving ME/CFS research underfunded and millions of people marginalized, sick, and socially unsupported.

Lighting Up a Hidden World: CFS and ME advocates for those too ill to speak out, abounds with patient resources, and offers realistic hope for the future. People living with this illness, along with their family and friends, will find compassion and camaraderie in its pages. This book reaches beyond the ME/CFS community exposing the themes of human suffering, resilience, and the need for social change.

“Val’s book, Lighting Up a Hidden World: CFS and ME is very unique. Her poem, based on the song “My Favorite Things” from The Sound of Music is playful and yet the words to the poem are very serious and upsetting. Using this song makes her writing accessible so it’s not just a rant. A lot of books on ME/CFS are so serious that you can get sick of reading them because the subject is so depressing. Her book has not minced any words, but because of the format and some very cool illustrations, it was a little more playful. I was not expecting to like it as much as I did. I couldn’t put it down because I wanted to see what she had gleaned and how she presented it. I read it from cover to cover within a few days.

Val’s book is very accurate. She did her research. And I liked her mixture of formats – having the poem going throughout and then having the sidebar and footnotes explaining the context and meaning. Then there were the personal stories. It concludes with the appendices, which not everybody will want to read, but I read every word. With this book, Val Free has done a great job.”

Eleanor Stein MD FRCP(C), Psychiatrist in Private Practice and Assistant Clinical Professor, University of Calgary

“There is truth in this inspiring book, which shares the heroic stories of individuals with ME/CFS who have battled stigma, discrimination and persecution in their search for appropriate care. This moving account of what Valerie and others have done is a must read and ultimately provides hope for us all that the status quo can be transformed through social action.”

~Leonard A. Jason, PhD, Professor at DePaul University, Director of the Centre for Community Research, and author of Principles of Social Change, Oxford University Press (2013) (IL, U.S.)

Valerie Free