SALT LAKE CITY — These individuals may not have a missing limb or malignant tumor requiring surgery or chemotherapy, but the effects of myalgic encephalomyelitis or chronic fatigue syndrome can be equally debilitating.

CFS/ME affects neurological function, metabolism, hormonal regulation and circulation/blood pressure, giving the sufferer crippling fatigue. Estimates place sufferers in the millions, costing the U.S. economy as much as [$25 billion a year.](<http://www.laskerfoundation.org/media/pdf/factsheet23cfs.pdf >) Many face the condition without the medical support or understanding that those who suffer from cancer and other well-known diseases find in their communities.

Dedicated individuals over the past decades have wearied in trying to bring CFS/ME to the forefront of public attention. Only recently have scientists and doctors found validation, not only from the tangible results they are discovering from their research but from government agencies such as the CDC and NIH acknowledging a medical basis for the severity of the illness.

A recent study, headed by Dr. Jose Montoya, an infectious disease specialist who helped establish a chronic fatigue syndrome team at Stanford School of Medicine a decade ago, is receiving national attention by shedding further light on what is behind CFS/ME.

A University of Utah professor and Nobel Prize winner, Mario Capecchi, is on the scientific advisory board for the California-based Open Medicine Foundation," a private organization working on the genetic side of the disease, called the “End ME/CFS Project.” Hope in the CFS community is that both types of research will yield better diagnosis and treatment.

Previous studies revealing structural abnormalities in the brains of CFS/ME patients led to a more in-depth examination of these irregularities.This study, the most expensive study that the Stanford team has done so far, utilized MRI imaging. The images demonstrated abnormal white matter in CFS/ME patients, suggesting an inflammatory process is impacting the brain.

Celebrities who have ME/CFS

&bull; Laura Hillenbrand, Author <p> &bull; Randy Newman, Composer/Singer/Pianist <p> &bull; John Rutter, Composer <p> &bull; Blake Edwards, Film Producer/Director/Screenwriter <p> &bull; Michelle Akers, Athlete

“Gray matter is where the thinking cells of the brain is. White matter contains the tracts that connect grey matter to the end organs, and white matter inflammation may delay or disrupt communication between gray matter and the body,” said Dr. Lucinda Bateman, a nationally recognized specialist in chronic fatigue syndrome who practices privately in Utah.

A problem with diagnosing ME/CFS is that it is often perceived as “kitchen sink definition,” with some health care providers — and self-diagnosing patients — labeling non-specific, poorly understood symptoms as CFS. This marginalizes the patients who actually struggle with the very specific symptoms of CFS or ME, preventing them from receiving needed care, Bateman said.

“In Europe though, they define ME much more tightly and they don’t like us saying that CFS and ME are the same thing, because the CFS criteria, unfortunately, pick up a lot of people with fibromyalgia, depression and mental health issues. They are just not specific enough," Bateman said. "If they don’t have any obvious cause for illness, they get grouped under the CFS criteria. So, ME and CFS are not the same thing. I use 'CFS' because that is the term that people in this country know the best. Over the last five years, we have tried to introduce the idea of calling it ME/CFS. And actually the federal agencies adopted the term ME/CFS because patients were upset with the previous categorization of CFS.”

The term ME is uncomfortable for many U.S. scientists and doctors because “itis” denotes that there is inflammation that you can see under the microscope or measure. However, recent studies suggest that the “itis” — or inflammation — might be there. “Which is really huge,” according to Bateman.

Getting attention for this illness has been a colossal task though, becoming a lifetime effort for most who have become involved.

“This is an illness that does not have any push behind it. It isn’t sexy, it isn’t famous, it doesn’t look easy to solve, it traditionally has not had good funding and it's hard to define," Bateman said. "So it kind of got stuck in the quagmire of inertia — and not moving forward in academic or government research.”

Bateman, a Utah native and a member of the Institute of Medicine (IOM) medical committee to create a new clinical case definition for ME/CFS, has dedicated her life to discovering the cause of and how to treat this particular illness.

After her sister was diagnosed with chronic fatigue syndrome, and was unable to fully engage and function properly the duration of her life, Bateman was determined to get to the core of the problem.

“I got interested in this area when I was in my first year of residency at Johns Hopkins School of Medicine, and when I was in my first year of residency at the University of Utah. After I came back to Utah, I found out that my sister who was previously a skier, cheerleader and got married and had a couple young kids was sick,” Bateman said.

While Bateman wanted to find a way to treat her sister, who was diagnosed with CFS, she was met by hostility from within the medical community.

“I really was surprised because I came here from an institution that prides itself on asking hard questions and listening to the patient and all the things that are a part of the aura of Hopkins, but I was met with eye-rolling,” Bateman said.

Bateman emphasized that giving people a diagnosis is really important because it finally validates their suffering. After the patient’s symptoms are addressed, they often get their personality back, because it creates a framework for treatment.

“The data supporting these illnesses are huge now. It is an advancing and rapidly moving field,” Bateman said.

A patient's experience —Gary Kovacs

Gary Kovacs, a patient of Bateman's, former business owner and former Olympic-qualifying bobsled team member, has been fighting this illness for years. He first noticed some of the symptoms while he was helping his kids set up a basketball hoop in his early forties.

“I had set up a basketball standard with the intention of playing basketball with my boys. I found instead, that every day after work I was too tired. Work took everything, and there was nothing left for my family. That basketball hoop got very little use,” Kovacs said.

Eventually, he decided to talk to a specialist about his debilitating condition. He talked to doctor after doctor. Some tried to increase his serotonin levels or give him more testosterone to boost his energy, but nothing truly helped.

“I mean he really did valiantly try to see if there was something that could be done,” Sheri Kovacs, Gary’s wife, said.

CFS/ME appears to have a genetic component to it as well. Kovacs has two brothers who have had this illness and who have both died at young ages. One of Kovacs' brothers was an internationally ranked motocross racer, but at the end of his life he was unable to do much of anything. The family also has a niece and nephew who suffer from the condition.

Figuring out what causes this illness is especially difficult, though, because there had been so little federal money devoted to the project and not enough specialists dedicated to the project, Bateman said.

“Dr. Bateman helped wrap your head around the illness emotionally, understanding that this is what life is going to be like and trying to find what that new normal is. Having her as a respected authority say, really, this is your diagnosis this is, and this is what you can expect, helped us adjust to it in a more serious way,” Sheri Kovacs said.

One of the greatest struggles that CFS/ ME patients have is that of explaining their condition to their friends and family.

“Lots of people say that, ‘well if you just work up to things,’ but with this disease you can't work up to things, it makes it worse. It's frustrating because people assume that if you would do something you could make a difference, and it's not true,” Sheri Kovacs said.

Gary Kovacs was also active growing up. He did track and football in high school. In college, he was in a rock band and then in 1997, he was on the Hungarian bobsledding team.

“I would play all night long. I was able to do a lot of stuff physically, and I am bringing that up because I have the feeling that some people think that ‘well you have always been kind of lazy’ and this is the way of me kind of saying, no that’s not really the case,” he said.

“You try to put your best foot forward when you are around other people — especially your family, and so I am not really sure they have any idea of how bad it really is,” Sheri Kovacs said.

To even play with his grandkids or hold conversations is difficult for Gary Kovacs. He spends 90 percent of his day watching TV, reading books or doing puzzles. He is up and about between two-three hours during the day.

“One thing that is really frustrating for me is that I wish that I could study a language or just anything but I can’t remember like I used to,” Kovacs said.

The most recent studies have excited Gary and Sheri Kovacs because they attach validity and facts to an otherwise invisible disease that doctors and the public have tried to understand.

“It is a hidden disease. Appearances are deceiving. I think those are the biggest things that I would want people to know,” Gary Kovacs said.

“Trying harder will not take it away. You can’t just will it away,” his wife added.

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