NFA President recognized by Business Magazine

http://www.fmaware.org/site/News2?page=NewsArticle&id=7017

CONGRATULATIONS, LYNNE!

Lynne Matallana
National Fibromyalgia Association
President and co-founder of the Anaheim-based organization; fibromyalgia affects about 10 million Americans

AGE: 52
Words to live by: “You have to be flexible.”
Role model: “Any woman who embraces the opportunities that perhaps were not there 100 years ago.”
What she has a lot of: Shoes

Matallana of Orange is living proof that she followed her pain into an international cause. Her nonprofit is a reflection of her desire to raise the efforts of diagnosis, which took too long when she was afflicted by the chronic pain disorder in 1995; the profile of the disease, which some still question; and the therapies to help those sufferers. There is good news on that last front: The FDA has approved Lyrica, a drug that helps ease their pain. As the New York Times reported this year: “Lyrica may…legitimize fibromyalgia, just as Prozac brought depression into the mainstream.”

Matallana, whose ongoing regimen includes a fitness plan built around her business trips, has helped with the educational part. “It takes a long time for people to come to understand a disease,” she says.

Educating health-care providers is a growing part of Matallana’s life: “The scientists are doing wonderful work, but without the perspective of the patient, they can’t make sense of all of the findings they are coming up with. So, when a patient and a health-care provider team up…we can be more successful in dealing with that illness.”

There is no cure for fibromyalgia. “What the association does is provide hope. I know that when I was lying in bed, if I had known that there were scientists researching it, and an organization…fighting every single day to find ways to help improve my quality of life, that would have given me strength. It will get better.”

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I agree with Lynne -- one thing that has kept me from getting depressed is that my very first specialist in 1988 was one of the researchers working on it. 

OK, I didn't expect that 20 years later I'd still be waiting for a cure, but from the very first, I knew that this very talented, Ivy League trained virologist was intrigued and looking for answers, so I knew there was hope.  And that meant a lot to me.  I wasn't fighting this alone, there was at least one highly intelligent doctor with the correct training to find the virus and figure out what to do about it.  He gave me hope. 

Turns out that all he could give me was hope, because CDC has undermined CFS at every turn, but hope remains something to cling to in the darkest hours ... despite the efforts of CDC to define ME/CFS out of existence, we do have privately-funded researchers and foreign researchers not under the thumb of CDC who are making progress. 

And, thanks to the internet, I now know that there are other activists out there fighting the same fight I do, and we do keep each other's spirits up; one of us will be feeling like we're banging our head against a brick wall, and another will have the success of getting something published in a mainstream publication to get a few more people aware that CFS is neither depression nor laziness, but a valid physical ailment with biochemical causes, which gives us all reason to celebrate.