Former Cal student struck by disease


Photo courtesy Mark Camenzind

Cal alumnus Tom Camenzind has had his life changed by a disease called M.E. He is now unable to perform simple tasks and go about his life as usual, and has been reduced to lying in bed all day.

For Cal High Alumnus and Stanford student Tom Camenzind, life has approached a standstill as the result of the disease M.E./C.F.S.

M.E./C.F.S. affects no less than one to two million people in the U.S. The term itself, myalgic encephalomyelitis, carries a provoking explanation: neuro inflammation of the brain and the spine. Individuals with the disease find the most effortless actions, such as walking, talking, or even concentrating, to be strenuous. Furthermore, due to cognitive impairment, they find it problematic to participate in any sort of lifestyle activity that requires even marginal amounts of comprehension.

“With M.E., I would say you tend to have brain fog where it’s very difficult to think and you have a lack of energy in general,” said Mark Camenzind, Tom’s father.

Unfortunately many people can’t find the words to express the condition of brain fog, therefore exchanging it for generalized terms like headaches or exhaustion.

Fatigue, however, connects to post-exertional malaise, a vital concept that patients with the disease experience.

M.E. has the term post-exertional malaise (PEM) coined to it because the slightest of actions performed by the affected, such as working or exercising, cause them to remain bed-bound and too tired to function for days or even weeks to come.

“Some of the people will do something energetic – it could be fairly minor, just five minutes or so – and they end up getting wiped out for a day or two, or maybe even longer,” said Mark Camenzind, “And for others, they get out for a day and they pay for months.”

In severe cases, patients are too sick to respond or even get up. Some even overexert themselves simply with exposure to light or by sensing another person in the room.

Tom, who suffers from some of these severe symptoms, is currently bed-ridden. His eyes are covered, and he has earmuffs with a noise reduction rating of thirty decibels strapped to his head.

Prior to developing M.E., however, Tom had graduated from Cal High in 2012 and was a bright college student enjoying his second year at Stanford.

“Tom was the happiest I’d ever seen him,” said Dotty Camenzind, Camenzind’s mother. “He loved Stanford, he loved computer science, he loved his friends, he loved his classes, and he was excited about the research he was going to do.”

Tom began to develop the disease in January of 2014, when he came down with the flu and a persistent set of chills and shakes.

“He was nineteen, just getting ready to turn twenty,” Dotty Camenzind said. “But there are different presentations of this disease and Tom had the slow onset.”

The pinpointed cause of M.E. is ambiguous, even to scientists. However, many believe that the progression towards the total deterioration of health begins with a common flu or cold. After that, the disease consequently jeopardizes the immune system of the victim, as seen with Tom.

“After the flu, he couldn’t seem to recover very well,” said Mark Camenzind. “Then around February, he got a second cold on top of all that and by this time, he was behind in class because he was sick and trying to catch up, but he’s overworked himself and he crashed on the weekends.”

On the same spectrum, CEO of Solve ME/CFS, Carol Head, was one of the many to endure the disease. For reasons still unknown to scientists, a select few manage to gradually somewhat recover from the disease. Head was one of these lucky few.

“I have no idea why I got better and I have no idea why Tom didn’t,” Head said. “It’s a sort of disease that waxes and wanes like many chronic illnesses, but it really dominated my life, completely, and for some period of time I was bed bound. I tried everything under the sun to get better. And I did eventually, over the course of several years, regain function.”

With M.E., however, Head affirms that there hasn’t been a single case where the individual fully recovers, her’s included.

“I’ve been fortunate to live a fairly normal life for the last thirty years, but you know I’m still very careful about not over using my energy. So I’d say I’m ninety-five percent recovered,” she said.

Despite the number of individuals whose lives are restricted socially and physically with this disease, when brought to doctors’ attention, it has been dismissed as nothing but a case of ‘depression’ or ‘laziness’. M.E. is anything but that, even though it is often discounted as such, because patients don’t visually broadcast their symptoms.

Photo courtesy of Mark Camenzind.

“I was passed from doctor to doctor and told I was depressed and to get over it when I had M.E. in the 1980s,” said Head, “But even today most doctors are not familiar with it and don’t diagnose M.E. Really, it’s a chronic debilitating disease with no known cause and no approved therapies or cure that destroys lives.”

People like Tom, who still struggle to cope with M.E., have taken trial-and-error approaches with their bodies to see what might make themselves feel better. Some adjust to the pharmaceuticals or immune modulators given whereas others, such as Tom, seem to react the exact opposite way in that their infirmities only magnify.

Out of the two million in the U.S. that have M.E., there is no concrete barrier that divides who and who can’t get this disease. M.E. can affect people of all ages, regardless of ethnicity or race, although it tends to target females more than males.

Another intriguing statistic about M.E. comes from Linda Tannenbaum, CEO of Open Medicine Foundation, whose foundation finds effective treatments and objective criteria that defines the disease and makes it easier to diagnose.

“M.E./C.F.S. is the most common reason that adolescents are out of school for long periods of time,” she said. “It’s not diagnosed easily, so most parents and kids don’t know they have it. 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.”

Tannenbaum stresses that it’s important for parents to be aware of the fact that the disease isn’t uncommon in high school kids.

Although this disease happens to be a prevalent factor of many individual’s lives, it currently stands with no FDA approved drugs or therapies, which are all due to the fact that M.E. is underfunded.

“We have to cure people like Tom,” said Tannenbaum. “They have to get better. It’s up to us to find a cure and we have to do it quickly.”