Monday, March 14, 2011

Question of the Week: What Is Your Current Opinion of the NFA?

Wow, where do I even begin? A lot of things happened here at OMA&P! last week. I admit that today I am still in recovery mode from all the excitement.

If you missed any of my posts regarding the National Fibromyalgia Association (NFA), I've created a bit.ly bundle that groups all the posts together into one link for easier access: http://bit.ly/gOZBIZ

What you might have missed over the weekend is the publication of Lynne Matallana's official statement over at the FibroHaven blog. It also was sent out
as an email with the subject line NFA President's Message from the address newsletter@fmaware.org. I just received my copy Sunday at 4 am.

What I haven't shared with you yet is that I was scheduled to interview Lynne last Thursday, March 10th. I was contacted by a PR consultant working with her last Tuesday after my post What Ever Happened to the National Fibromyalgia Association? was published and apparently shared and discussed at a NFA Board meeting that evening. Unfortunately, that telephone interview was canceled by Lynne one hour before our scheduled meeting time. As I write this post, I am still waiting to hear back from Lynne's PR consultant who promised that the interview would be rescheduled.

Personally, I want to take a couple of days to digest the events of last week and consider Lynne's statement. But that doesn't mean I haven't been wondering what your opinions are about her statement. So this week I want to know: What do you think of the NFA now?

You have my word that I will publish every comment I get on this topic. For the comment shy, I want to make you aware that you can comment anonymously on my blog (which has been the case for a while now.) I am hoping to understand through your comments whether you are satisfied with the statement that has been released or if you feel more needs to be said.

In addition to commenting here, you can also share your thoughts over on the Oh My Aches and Pains! Facebook page or with me on Twitter where I am @SelenaMKI.

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Fibrofog said...

I'm glad they finally came clean. Too bad it had to get ugly first. I'm sorry you got caught up in the controversy, Selena!


Fibrofog said...


Iesadora said...

I got there coming clean e-mail too. I don't know, it still feels shady to me or maybe I'm still put off by the whole situation. They said that they couldn't release any information due to legal constraints, I don't buy it. While they might not be allowed to give specifics (that I understand) there still should have been due to budget cuts we are exploring other avenues to continue to provide they support that NFA has blah blah. Not just a give us money e-mail, then check out this other newsletter e-mail, then nothing but all the questions and shadiness that you have researched and documented. They ABSOULTY should not have waited until a meticulous bright cookie like you brought their crap to light. Their 'coming clean' e-mail should have gone out long before you took upon yourself to try to find answers for us in the Fibro community and bring this issue to their doorstep. Selena you are an incredible woman and I really appreciate all the work you have put into this. Thank-you!

Jenifer L. said...

As I lie in bed catching up on all that's been happening, all I can say is that I am incredibly disappointed and heartbroken that (as others have said) the organization that has given me hope and comfort for the past 3 years since my Fibro symptoms began, has pulled the rug out from underneath us. The shadiness with which the NFA has handled this entire situation is an enormous blow to our efforts to validate our illness to the medical community, the pharmaceutical industry, our employers, our families, and our law-makers. How can people with Fibromyalgia convince people that we're NOT crazy, when our leaders--people we looked up to & counted on, flaked out on us all.

Selena, you have shown courage and integrity exposing this information, we all have a right to know. You have done something extraordinary for your fellow Spoonies, and I thank you from the bottom of my broken heart.