Recently, I had the opportunity to publish my first book, “An Adolescent’s Guide to ME/CFS.”

What started as a newspaper article in The Californian two years ago led to a product that will hopefully educate one more person or patient about myalgic encephalomyelitis/chronic fatigue syndrome.

My efforts to publish the book  also go to show, I believe, that passion surpasses age and that when someone embarksupon a goal and continuously work at it, good things are eventually bound to occur.

The story of my book all began when I decided to write my first article in The Californian as a sophomore, about two years ago. I had learned that my neighbor, Tom Camenzind, who was a former student at Cal High, had to drop out of Stanford University because of a disease that he had. The topic was relevant, and it was a subject that I wasn’t familiar with, so I decided to look more into this disease and write an article about my neighbor.

Once I had interviewed his family, other patients, and the founders of ME/CFS foundations as sources for my article, a new sight began unravelling in front of me. This community of patients and their families were struggling with this disease – a complex, debilitating disease that has no biomarker, pinpointed cause, FDA approved treatment, or cure.

And the fact was, they weren’t alone. Between 17 and 24 million people around the world suffer from ME/CFS. In reality, this number didn’t even account for the number of individuals who had no idea what disease they had, or who they could turn to for help.

The patients I interviewed really opened my eyes on this issue. Every day was a fight for them to have their voices heard, spread awareness about the disease, and stop being treated by doctors and the general public as if they didn’t have a real illness. They were so thankful that a “healthy,” or someone who didn’t have ME/CFS, was taking the time to educate other people about the reality of a life-altering disease.

While looking further into the subject, I learned that ME/CFS happened to be one of the leading reasons as to why students in educational institutes were absent for long periods of time. What’s even worse than having ME/CFS is having to struggle with the disease as a teenager. Often times, because of a young person’s age, he or she will be disregarded of having the disease. The thought of a teenager, like me, suffering with a disease that he or she didn’t know of was terrifying.

So began my project two years ago when I decided that I would give what I could to the ME/CFS community. I started by using the information that I had gathered as a reporter and built upon this knowledge by doing extensive research, and soon I had written my first draft. It was not splendid, and it lacked direction, but it was still a draft.

Through the contacts that I developed, I was able to connect myself with ME/CFS researchers and clinicians from across the nation that had an extensive understanding of the subject. The edits they provided my drafts were both blessings and burdens. They helped make my book the most accurate version of itself, but I was subjected to long nights of rewriting and redrafting. Before I had sent my manuscript off to publishing, I had gone through a good 13 drafts of the book.

When I was finally able to secure a publisher, the process became a matter of coordination and waiting. The cover designer in Austria only worked when it was midnight here, interior formatting and designing took months, and receiving proofs to see how the book would look physically took weeks. But when the grueling process was finally over, the satisfaction was like no other I had ever had.

One hundred and twenty two pages and 25,000 words later, I had a book.

Looking back, I can say this was an experience that I will always remember. It will always be a milestone and serve as a lesson for any of my future endeavors.

But most importantly, it will help a community of the strongest and most resilient people I know. It is a product of love and communal responsibility, and my hope is that this book will help raise awareness and funding for research dedicated to finding a cure for the disease.

“An Adolescent’s Guide to ME/CFS” is now available on Amazon and other platforms, such as Nook, Kobo, and Kindle, among others. All proceeds from the book will be donated to the Open Medicine Foundation, which is an organization that focuses on advanced scientific research to find effective treatments and diagnostic markers for ME/CFS.

Check out Vidhima Shetty’s original article below.

Former Cal student struck by disease