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Staying Healthy: Local teen publishes book on chronic fatigue syndrome

Guide for adolescents gives overview of little-understood disease

When Vidhima Shetty was brainstorming story ideas with the staff of the California High School newspaper a few years ago, she thought about a neighbor who had graduated from Cal High in 2012.

"He was a college student at Stanford, and I had heard he was severely ill with a disease," Shetty, now 17, recalled. "I thought maybe I should go over and find out what's going on."

His parents, Mark and Dotty Camenzind, who are both doctors, welcomed her and explained that their son Tom was suffering from chronic fatigue syndrome.

"These were two parents in pain," Shetty recalled. "Their son was doing so well, and then his entire future unraveled before their eyes. Tom was getting progressively worse."

The disease is also known as myalgic encephalomyelitis, which means a neuro inflammation of the brain and the spine, Shetty explained. Referred to as ME/CFS, it strikes people of all ages, ethnicities and genders, causing profound fatigue after even walking, talking or concentrating.

"This disease affects 1.5 million to 2 million people in the United States, but it is not very well-known," she said.

Compounding the suffering, she noted, they have to deal with people who do not understand it.

Shetty is on a mission to spread awareness about the disease, and recently published a book on the subject, "An Adolescent's Guide to ME/CFS." She donates proceeds to the Open Medicine Foundation, which is doing research to find a cure.

The 122-page book covers possible causes, the lack of understanding from the outside world and coping strategies.

"There is no cure and no FDA-approved treatment but there are interventions people can take," Shetty said. "Every patient reacts differently."

Shetty targets young people with her book because ME/CFS is the most common reason adolescents are out of school for long periods of time, according to Linda Tannenbaum, CEO of Open Medicine Foundation.

"It's not diagnosed easily so most parents and kids don't know they have it," Tannenbaum told Shetty. "And a lot of people think that the kids are lazy, that they don't want to study, or have a hard time concentrating because they don't try hard enough."

Mark and Dotty Camenzind told Shetty that Tom had been thriving -- he loved Stanford, his friends, and his classes. Then in January 2014 he came down with the flu and did not seem to recover. He soon caught a cold, fell behind in his classes, and worked hard to catch up. The disease consequently jeopardized his immune system, his parents explained to Shetty.

Some patients may be wiped out for a day or two after even the slightest activity, Shetty said. But Tom's case is much more severe; he is bedridden and cannot tolerate light or noise.

"Tom has to wear soundproof earmuffs and eye covers because he is extremely sensitive," Shetty said.

Her story was published in The Californian in September 2016, and the reaction was immediate.

"I started getting comments from all over the world, thankful that someone who doesn't have the disease went out of the way to write about it," Shetty said. "My desire to write the book came after the article came out."

She researched the subject and found medical professionals to look over her findings. She then emailed her manuscript to literary agents, who noted either that she was too young or didn't have a medical degree.

"I then sent the manuscript to Tri-Valley Writers and someone with a publishing house reached out to me," she said.

Russian Hill Press published the book in August, and it sells on Amazon for $7.49 in paperback, $6.99 Kindle. She has sold about 200 books and distributed another 250 herself to hospitals, schools, libraries and other organizations.

Shetty, now a senior and editor of The Californian, is undecided about where she will be heading to college in the fall but she wants to continue with journalism.

"I want to use my voice to help other people," she said.

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Comments

2 people like this
Posted by Michael Austin
a resident of Pleasanton Meadows
on Jan 28, 2019 at 5:55 pm

When you write a book and before publishing it, have it edited twice by two different editors. Then publish it.


4 people like this
Posted by Pleasanton Parent
a resident of Pleasanton Meadows
on Jan 28, 2019 at 11:58 pm

Im sure this is a real condition, but like many real conditions im sure its over diagnosed (ie if the treatment is to transfer from Stanford to Berkeley - its more self inflicted than experienced)


10 people like this
Posted by ME Caregiver
a resident of another community
on Jan 29, 2019 at 8:37 am

Regarding Pleasant Parent's comment: Myalgic Encephalomyelitis IS a very real and extremely debilitating condition affecting the immune system, neurological system, endocrine system and energy metabolism system, leaving the severely affected bedbound/housebound for years/decades, and in most cases without proper diagnosis and treatment from GPs. ME is not widely taught in med schools, so this is in no way an over-diagnosed disease!


6 people like this
Posted by ME Caregiver
a resident of another community
on Jan 29, 2019 at 8:42 am

And one more thing Pleasanton Parent: There is overwhelming evidence to debunk your theory that ME is a multi-system physiological disease that is not "self-inflicted." Please do your research before spreading falsehoods and engaging in patient blaming.


4 people like this
Posted by ME Caregiver
a resident of another community
on Jan 29, 2019 at 8:47 am

Correction: My statement should have read that ME is a multi-system physiological disease that is not "self-inflicted."


4 people like this
Posted by Todd
a resident of another community
on Jan 30, 2019 at 10:59 am

Just want to thank ME Caregiver for their comments. As a caregiver for an ME/CFS Patient I know how real this disease is.


4 people like this
Posted by I have ME
a resident of Livermore
on Jan 30, 2019 at 11:01 pm

Kudos to Ms. Shetty on her book and many thanks for helping spread awareness of this misunderstood, devastating disease. Had I known more about ME/CFS when I first became ill I would have made different life decisions (moving in with family when I could no longer work for example) instead of living on my savings thinking that I'd soon be working again. Six years later I'm still sick plus destitute. Very few people achieve remission; it might be a different if the NIH wouldve funded research appropriately. But instead they spend more money to study male pattern baldness.


Like this comment
Posted by Living with Me
a resident of another community
on Feb 2, 2019 at 1:43 am

Living with ME is a daily challenge. For 7 year since my symptoms began, I have lived with progressive symptoms that have rendered me homebound. I was a very active, accomplished professional who loved life. I still love life but had to retire, stop all athletics and now live a very circumscribed life. This has been hard enough to deal with at 64; for an 18 year old it is an even crueler reality. For the parent who wrote in, I hope others show you more compassion when something happens to your family member than you have here. Your comments are insensitive at best. Kudos to Ms Shetty for shedding light on ME AND donating proceeds to Open Medicine Foundation.
With hope and resolve to help shed light on ME.


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