Joyce Tynes has a close friend who suffers from a severe case of fibromyalgia. This woman has given up, Tynes says. She won’t donate to fibromyalgia organizations or follow the research.
“I’m not ever going to give up!” says Tynes, sick with CFS since 1987. “If I can’t get better, then maybe someone else won’t get it, or if they do get it, they get better faster. That’s why I support the new research.”
Following eye surgery from which she got an infection, Tynes was hit with successive bouts of pneumonia and mono. The mono never went away. “I was in a corporate position that required my presence and I tried to get back to it, but I walked around for a year feeling like I had mono all the time,” she recalls. “I finally got connected with an internist who’d heard of the outbreak in Incline Village. He said, ‘you have all the symptoms.’ He did test after test after test after test and did all the exclusions and finally diagnosed me with CFS. He got me six months of sick leave and was later able to validate my case for long-term disability with my employer.”
Three years later, she was eligible and approved for Social Security disability.
Shortly after her diagnosis, Tynes began researching her illness. She read about the findings of a doctor in Incline Village as she spent countless hours at her local library, copying articles to take home to read. During this time, she found the CFIDS Association and met a gentleman in Dallas who wanted to start a support group for sufferers. He launched – and she participated in – what would become one of the largest and most active groups.
And all the time, Tynes hoped. “I was so in hope that there would be a cure for me. I tried to find different treatment plans that other people used to see if they would work for me. I tried everything,” she says. “Then I got focused on my daughter in college and tried to put the illness on the back burner and live around it and with it.”
Her gift to the Catalyst Fund is made in honor of other long-time patients like herself. “I wanted to make sure people who’ve had CFS are known, that we’re still here and supporting the new research. I wish we could feel like there’s something that could be done for us,” Tynes says. “But – anything to make progress and move forward, I’m excited about that. I’m excited to support the research so the illness doesn’t get lost in the mayhem of red tape. I’m excited to research in different areas of science and get the researchers to pool their knowledge and work together as a team to potentially create better means by which to diagnose, treat and eliminate this illness. My life is significantly hindered by CFS. It would mean a great deal if we could conquer this thing.”
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