What Happened to the National Fibromyalgia Association?
Over the past several months, I’ve received questions from a number of you asking what happened to the NFA, why their phones seemed to be disconnected, and what was going to happen with your magazine subscriptions. I’ve been trying to get answers for you, but the whole situation has been very mysterious and secretive. At this point, there are still far more questions than answers.
You may be wondering why I don’t know what is going on since, as many of you know, I co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997. However, I have not been involved with the NFA since early in 2006, when I resigned and turned my full attention to writing about fibromyalgia, ME/CFS and chronic pain as well as interacting with patients on a more personal level. For the next three or four years, I had only minimal contact with anyone at the NFA. Then in the past year and a half, I haven’t had any contact at all. So I’ve been as much in the dark about all of this as you.
Earlier this year, Lynne finally sent a message to NFA members attempting to offer an explanation of what had happened. The wording of the message was somewhat vague but indicated that the NFA had faced severe financial problems and also alluded to some kind of legal issues.
- As a result of the national economic downturn, the NFA lost 60 percent of its funding.
- In September 2010, at the height of NFA’s financial crisis, Lynne was in a serious car accident that resulted in major surgery and left her bedridden for four months, followed by many more months of physical therapy.
- Although the legal issues were not identified, the lack of communication with NFA members was explained by saying, "…we were bound by legal constrictions and agreements of confidentiality to wait until we had developed a plan that would satisfy many of our issues."
In addition to explaining some of the problems, Lynne’s message also announced that the National Fibromyalgia and Chronic Pain Association (NFMCPA), under the leadership of Jan Chambers, would be taking on and implementing several of the programs originally developed by the NFA.
Finally, Lynne closed her message with assurances that the NFA would continue to support the FM community through media campaigns, continuing medical education programs, encouraging research, social media, etc.
You can read the full "Message from Lynne Matallana" on the homepage of the NFA’s Website.
In June of this year, Lynne stepped down as president of the NFA. Rae Marie Gleason continues to serve as the NFA’s Executive Director.
NFMCPA Answers Your Questions
Not surprisingly, since the NFMCPA took over many of the NFA’s programs, they have been inundated with questions about what their connection or relationship is to the NFA. Of particular concern to some was the question of what would happen with their subscriptions to NFA’s magazine Fibromyalgia AWARE.
Last month NFMCPA President Jan Chambers responded to the many questions she had received. In a nutshell, she explained that there is no ongoing connection between the NFMCPA and the NFA. Specifically, Jan:
- Credits the NFA for the excellent leadership training she received in their Leaders Against Pain program.
- Explains that when the NFA transferred a number of their programs to the NFMCPA, the implementation of those programs became the sole responsibility of the NFMCPA and will be carried out independently by them.
- Made it clear that the NFMCPA had received no money or financial funding from the NFA.
- Defined the purpose and plans of the NFMCPA.
As for Fibromyalgia AWARE magazine subscriptions, I’m afraid that is a question only the NFA can answer. Fibromyalgia AWARE was a publication of the NFA. They accepted the subscription fees and only they can say what, if anything, they plan to do about them.
Understandably, the NFMCPA cannot be expected to refund fees they never received for a magazine they did not publish. What they have done, though, to help fill the information void is to publish a free, high-quality digital magazine - Fibromyalgia & Chronic Pain LIFE. You can find it on the NFMCPA Website.
You can read Jan’s complete answers to your questions here: NFMCPA President Jan Chambers answers your questions about the NFMCPA and the NFA - I would encourage you to read the more detailed story of how the NFMCPA came be be, which can be found on the bottom third of the page.
It’s very difficult for me to share my thoughts on this subject. The NFA was like my baby and for nine years I invested my heart, my time and my money in her. Although I went through the pain of separation more than five years ago, it is still heartbreaking to see this current situation.
Over the years, the NFA has done so much for the FM community. I think we played a key role in helping bring fibromyalgia to the forefront. When we began, FM was an obscure illness that even most doctors had never heard of; today it is so well-known that there is a danger it may be over-diagnosed. I’m proud of the fact that the NFA was able to "educate, encourage and empower" thousands, perhaps millions, of FM patients around the world.
I truly hope and pray the NFA is able to pull through this difficult time and continue to serve the FM community as they have done so well for more than 14 years.
At the same time, I am encouraged by what I see at the NFMCPA. I am grateful that they were willing to step up and continue the important programs begun by the NFA and I fully support their efforts to serve and advocate for all of us who live with fibromyalgia. I hope you will give them your support as well.
Karen is the Co-Founder of the National Fibromyalgia Association. She wrote for HealthCentral as a patient expert for Pain Management.