I used the phrase Chronic Fatigue Syndrome (CFS) in the title of this piece because most people recognize that name. However, the preferred name among most people with this diagnosis is Myalgic Encephalomyelitis (ME). My doctor has changed my diagnosis to this new name (“new” in the United States—many countries already call the illness ME). During this transition period in the States, it’s common to call the illness ME/CFS and that’s how I’ll refer to it.
The title of this post “Everything You Need to Know…” refers to a new book, Lighting Up a Hidden World: CFS and ME. It is the most comprehensive guide to-date on this little-understood illness and the devastating effect it has on people’s lives. Lighting Up a Hidden World is both a compelling personal story and an in-depth investigation of this mysterious illness, based on decades of research. It’s a groundbreaking book that has the potential to change the face of this illness.
It was my privilege to write the Foreword to Lighting Up a Hidden World and to now share this interview I did with its author, Valerie Free. Here’s our conversation:
Toni: How long have you been sick with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
Valerie: Toni, I had a sudden flu-like onset in July 1990 when I was 30 years old. I remember the place, day and time. My husband, one-year-old daughter and I were on a road trip to where my parents lived. My large extended family was having a birthday celebration for my grandma there. About half-way, I felt nausea and symptoms which felt like the flu. By the time we arrived, I felt very weak and sick. I sat quietly through the outdoor party waiting for the flu to pass.
Unfortunately, my health never returned to its fullness. I was diagnosed with CFS rather quickly (about three months later) because in the mid 1980’s there had been cluster outbreaks of an unrecognized illness throughout the U.S. and Canada. The CDC named this mysterious condition “chronic fatigue syndrome,” in the late ‘80s. Doctors had been given notice of this. So although I had never heard of CFS, my doctor was quite prepared to diagnose it. Unfortunately, in 2017, it is usually harder to get a diagnosis than it was back then. I have been very ill and disabled for 26 years.
Toni: What inspired you to write the book at this time in your illness?
Valerie: In 2010, after twenty years of being ill, and having tried so many things to help myself heal, I began to examine why I was still sick and why there was no effective treatment or a cure that I had found. That led to a lot of questions and research. I had already been collecting scientific studies and knowledge from my own medical journey, but now I was reaching deeper into the hidden world of ME/CFS.
I found out that millions of people have the illness in North America and an estimated 17 million worldwide; that anybody can be affected by it; and that very few find their way back to robust health. That trail then led me to the history and politics surrounding ME/CFS and the medical ignorance about it that still exists. Realizing that I was part of the first generation in North America to experience this illness, I came to understand that many of us had become pioneers and I wanted to be part of the positive change.
The timing was perfect: My daughter had grown and moved away from home, my husband was doing some traveling, and for the first time, I was alone with my illness. That is when the writing began.
Toni: What were your goals for the book?
Valerie: At first, my goal was just to tell my own story in order to raise awareness, interest, and compassion for those with the illness. I had been talking with some professionals who taught me about the power of narrative medicine and storytelling in order to give voice to disempowered groups and make positive changes in medical treatment. Writing became my way to advocate for myself and others with ME/CFS as well as for those with similar illnesses that are off the grid of care and cure.
So as the writing progressed, it was growing from just my story into something much larger: an ME/CFS community project. I began to ask others to help and to share their stories—both professionals and patients—and it didn’t take long to have access to over 300 of them. We had to refine these accounts from others into segments to cover all aspects of the disease: from severity, to age groups, to journalistic perspectives and expert contributions.
Lighting Up a Hidden World: CFS and ME really does reflect the goal of the book. It covers all anyone may want to know, including the history and the hopeful future. The book ends with a How to Help section for those with the illness and for the general cause of ME/CFS. So in the end, I guess the goal remains the same as it was in the beginning: to make known the fascinating and complicated world of ME/CFS.
Toni: How did the project begin?
Valerie: That is a pretty special piece of the story. It started one day as I drove to a chiropractor appointment. I had just watched The Sound of Music near Christmas time. As I drove, I could hear the tune of “My Favorite Things” from the film, sung by Julie Andrews, in my head. My symptoms were raging that day and there was a Chinook blowing in. I began to sing my symptoms to the tune and it worked out pretty easily...
Chinooks and low clouds and changes in pressure,
Full moons and melting and things you can’t measure,
Perfumes and diesel and food allergies,
These are the things that bring me to my knees.
Over the next year, this song was sung by many of us as I perfected it to tell my personal story. I named it “The Chronic-Call”. There are 44 stanzas and this song/poem became the foundation for the rest of the book.
As I continued to research other facts about the illness, I learned that the late, great Blake Edwards (who created many award-winning films such as The Pink Panther) had ME/CFS for years. He was the husband of Julie Andrews. So then I realized I was singing his symptoms, as well as mine, to her tune.
I actually tried to contact Julie Andrews through her assistants but they said that chances were slim due to all the mail she gets. I think she would have thought that was pretty amazing. I know I did.
Toni: Explain to us why you decided to write the book in its unique hybrid style.
Valerie: It took the work of myself and many others—professionals and fellow patient editors, family, friends and even people I did not know—to create this style of book. It’s in seven distinct parts. Each one took a year to complete, so it was seven years before the book could be published. Here are the seven parts:
The goal was to have something for everyone, from the ill person looking for resources, to politicians, to health care providers, and also the general public. The book was created so that it could be read in small segments like Chicken Soup for the Soul. Each part tells a whole story.
Toni: How did you complete this long and intense project while so sick with ME/CFS?
Valerie: Over time, I realized that this book was working on me, rather than me working on it. I do mention in the book that writing and compiling it was “a calling”. I was functioning at about 30-50 percent most of the time which is pretty unwell. In the beginning, much of the writing came to me when I was sick in bed. I just kept a pen and paper near my hand and wrote down my ideas as they came. The next day I was left to decipher what the gibberish said.
As you can find on the Acknowledgment page of the book, I had a lot of help with writing, illustrations, and compiling. That is one reason the book is so unique. Not many books about ME/CFS are community or advocacy oriented because it takes so much extra time and effort, but it was worth it.
Unfortunately, but not surprisingly, the last year before publishing became very intense with the workload and the time involved. I was wearing down and neglecting my diet and other essentials. It became much more like grueling effort for a few of us. Just after publishing and getting some public relations done for the book, I knew I was relapsing. It has been a couple months of worsening health as I share this. I ended up re-knowing what 5 percent functioning feels like and how scary and desperate that is. The pain and suffering can be almost unbearable.
Many people confuse “chronic fatigue” (which is a symptom of many chronic conditions, including rheumatoid arthritis, fibromyalgia, or lupus) or “general tiredness” (which is lifestyle-related), with the specific illness “chronic fatigue syndrome” (ME/CFS). To clarify the differences, here are some of the major symptoms of ME/CFS:
Toni: Thanks for clarifying the difference between “chronic fatigue” and “chronic fatigue syndrome,” which is a specific illness. One more question: Who would be the audience that would most benefit from reading Lighting Up a Hidden World: CFS and ME?
Valerie: In all honesty, the book is a ‘good read’ for anyone because it is just an interesting book, both in layout and content, and it will benefit all readers in one way or another. One goal of writing it was so that the general public would have access to what is going on in the ME/CFS world and with other ignored chronic illnesses.
More specifically, we have found that health care providers appreciate the book and that those interested in politics also find it helpful. I have found that most people know someone with ME/CFS or a similar condition such as fibromyalgia, Lyme disease, or multiple chemical sensitivity. They have been really interested in getting more information.
Many people with ME/CFS are too ill to advocate for themselves, and their families are often unsupported; so help is sorely needed from the general public to sustain the progress that is being made.
Lighting Up a Hidden World serves as an advocate for the sick and a teacher for anyone willing to learn.
Lighting Up a Hidden World: CFS and ME is available at online bookstores around the world. To see several buying options for the paperback and eBook versions of the book, click here.
Valerie’s website, www.valeriefree.org has several reader reviews as well as a growing list of her appearances on various media outlets, such as radio interviews. You’ll also see a 5-star rating from Foreword Clarion Review.
Toni is the author of three books: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. Visit www.tonibernhard.com for more information and buying options.
See also, Toni's post: "The Stigma of Chronic Fatigue Syndrome."