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Creating her own hope in the CFS fight

LO woman battles Chronic Fatigue Syndrome for herself and others
by: Cliff Newell, Sara Mason has knowlege to share about Chronic Fatigue Syndrome.

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.

'All the research is being done in other countries,' Mason said. 'Australia, Japan, Europe. They're trying to do something at UCLA. But our government gives it virtually no funding.'

The proverbial last straw came recently when Mason's support group at a hospital in Portland had to disband because their meeting room was taken away.

But Mason does have some things working for her.

Thankfully, she has that all-important 'good doctor' in Scott Dunlap, an 'outstanding internist' in Beaverton.

'I research and he researches,' Mason said.

One piece of good news on the horizon is the first clinical trial of CFS medication at Stanford University.

As for the government research, Mason has hope for an attitude adjustment, since Huntington's Disease and multiple sclerosis, like CFS, were once seen as diseases of the mind and emotions, not the body.

But Mason's best asset is herself. Her effort to become healthy and her desire to get the word out about CFS to others in this community.

'I know other people in Lake Oswego have this disease,' Mason said. 'The most important message I can give them is each person needs to be their own advocate.'

Sara Mason is encouraging the community to attend 'The Faces of CFS' national traveling photo exhibit in Portland through Monday, Feb. 11, at the Lloyd Center in the Nordstrom Court.

A campaign to convince

A campaign to convince

Marcia Harmon says the campaign on Chronic Fatigue Syndrome greatly resembles the War on Cancer of the 1970s.

'Like cancer, we don't know what causes CFS and we don't know how to cure,' said Harmon, the communications director for the CFIDS Association of America. 'But we know a lot more about it and we know ways it can be treated.'

It has been a difficult battle to gain ground in the public arena regarding CFS, since it was diagnosed in the mid 1980s. However, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) was launched in 2006, and public perception of the disease has since improved dramatically.

'CFS is real,' Harmon said. 'It is a biological illness, not psychological. And there are things you can do about it. There are treatments that are effective.'

A big part of the campaign has been people like Sara Mason of Lake Oswego coming forward to tell of their experiences. There have also been photo exhibitions, television and radio service announcements, print advertisements, and two new Web sites that offer education and public toolkits for dealing with the disease.

'It helps when Americans recognize the symptoms,' Harmon said. 'Then they know what to do. It also gives physicians the tools to treat this illness.'

This is an awareness campaign that is much needed, since Harmon says that studies have shown that more than a million people in the U.S. suffer from CFS. That is a greater number than suffer from lupus, multiple sclerosis or ovarian cancer.

'This campaign has been moving across the country,' Harmon said. 'What's amazing is how receptive people have been to the message that CFS is real. For the last 20 years a body of research has formed that shows how things are going wrong.'

Two Web sites offer much information about the campaign on CFS are www.cdc.gov/cfs and www.cfids.org/cfs .