This post is the conclusion of my interview with Lynne Matallana.

I asked Matallana if she could elaborate on the National Fibromyalgia Association’s (NFA) letter that was released in response to the purposed new diagnostic critiera for fibromyalgia from the American College of Rheumatology (ACR). “What we believe is that the diagnostic criteria that been used has been established for clinical trials. If we let go of that, [we loose] all of the clinical trial work. We’ll have to start over again, we won’t be comparing apples to apples. I think it is very important for research that we continue with the existing diagnostic criteria. I do feel that in a office, if the health care provider has time to get more information about the patient that it can be helpful. I’m not sure if we really know exactly what all of that information means yet.

I think we’re putting the cart before the horse a little bit. It is important that we don’t say, “we’re getting rid of this and we’re trying this,” until we know for sure that this other tool is workable, can be taught, and patients will be able to respond. I absolutely believe that we want to grow, we want to try things. We want to make it easier on the doctors and the patients. But, I think we may be a little premature. I think we need to call this a conversation and a discussion and not a time to throw one thing out and start something else.”

Before ending our conversation I was sure to have Matallana give a summary of all the ways someone can get involved with the NFA, even if they don’t live in California. “Often times we have events, like [cheering our "All Wheels 4 Fibromyalgia" team in Race Across America.] People can create a team and get other people in their community to help donate, which really helps [the NFA] Talk to people in your community that are well thought of and ask if they know of anybody with fibromyalgia. Help those people to then identify other people who are well known that may be willing to come forward and talk about fibromyalgia and share their story. [The NFA] is still looking for a celebrity to come forward. Through networking, maybe we’ll be able to find someone that will be able to help!

[The NFA] hopes to be able to do our Fame on the Road program, [having] events like [this Coping Seminar], but even bigger! People in communities could come together and each play a role: someone finds the facility, talks to the media or whatever. As we start creating programs all around the country, we’re going to need help and volunteers!

People can also share the website, which helps others understand that fibromyalgia is real and there are places where you can get information that not only tells you what it is, but tips and things to help you. Also, writing articles and sharing information on the NFA Facebook page. And being positive, giving information that will encourage and inspire other people.

[The NFA] is hoping to do a Capitol Hill day in every state. We’re going to need individuals interested in helping coordinate those. We do letter writing campaigns in states when an insurance company is not approving FDA approved drugs for fibromyalgia. Every time we have done them we have forced the insurance company to change their policies. People can get involved with this by helping to write letters.

I hate to say this, but [another way to be involved is to help] fund the NFA. It is a struggle every single month when we go to pay the bills. If there are people out there who do have the capacity to help financially, that can help us be able to do all the things [we hope to do.]”

Lynne Matallana at The Foxxhole radio channel*

*Image Credit: Photo from the National Fibromyalgia Association