Creating her own hope in the CFS fight

LO woman battles Chronic Fatigue Syndrome for herself and others

By Cliff Newell

The Lake Oswego Review, Feb 7, 2008, Updated Oct 30, 2009 (6 Reader comments)

Sara Mason has knowlege to share about Chronic Fatigue Syndrome.

Cliff Newell / Lake Oswego Review

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Sara Mason looks just fine. In fact, she looks petite and attractive.

However, the Lake Oswego woman is not well at all. She suffers from a condition known as Chronic Fatigue Syndrome, and what it does to her is just brutal.

Mason has slept up to 20 hours in a day. She has chronic headaches.

“I always feel like I have the worst case of the flu.”

She walks off balance. She has constant pain in her muscles. She is clumsy and drops things. She is always sore.

“But I look perfectly normal,” Mason said. “It’s hard to get any sympathy when you look healthy.”

Some sympathy would indeed be nice, but it is probably the last thing that Mason needs. What she does need is research, funding and public knowledge about something that, unfortunately, is not even seen as a disease in many quarters. To many people, even doctors, Mason’s physical troubles are all in her head.

So Sara Mason has become her own advocate. This is not easy for a woman who is always tired and in pain, but Mason is battling CFS on all fronts. She constantly seeks knowledge about CFS and tries to communicate with others about it as much as she can.

Most of all, Mason says this is what others stricken with this condition must do.

“I want to help get the word out because this can happen very suddenly without warning,” Mason said. “You’ve got to become your own advocate and, hopefully, get a good doctor. Pretty much, a CFS patient has to create their own hope.”

Memory loss is one other condition caused by CFS, but Mason remembers that she started feeling unusual neurological symptoms around 2004. It started when she could no longer walk a straight line.

This seemed incredibly unusual because Mason seemed as unlikely a prospect as anyone could possibly be for coming down with CFS. Because, basically, she did everything right. She was slim and trim, she exercised all the time, she walked her dog and played squash. She had never even met anyone with CFS.

But the biggest irony about Mason’s situation is that her career has been being an executive in the health industry. She managed health plans and HMOs, she was a consultant to physicians, she worked for Kaiser and Cigna. She even comes from many generations of doctors.

“Developing health plans and managing physicians, you get a sense of how health systems can work,” Mason said.

But all of that could not stop the symptoms that kept accumulating, until finally she became extremely ill, right after a consultation with a doctor, around Valentine’s Day of 2005.

“I finally got a diagnosis,” Mason said. “I had Chronic Fatigue Syndrome. It has zip credibility. Few doctors can treat it, and there is no set of diagnostic tests for it. Usually you get a prognosis, have specific treatment and you get well. But with CFS your body malfunctions in a Byzantine number of ways. You get sick but you don’t get well.

“There are no treatment plans. It’s almost like you’re in a car accident. Your life and health paradigm changes. It’s a very complex disease that attacks the entire body.”

Getting the disease was bad enough. What followed was even worse. Mason could not even find how it happened, although she did come across some theories.

“There’s a belief that a virus triggers it,” Mason said. “If you’re in the wrong place at the wrong time, you get it.”

But the worst thing Mason found was almost total ignorance and extremely low funding when it came to CFS. In the book, “Osler’s Web” by Hillary Johnson, it is detailed how the government’s “decade of denial” has tremendously hindered research about the disease.

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