tag:blogger.com,1999:blog-1190707857355048493.post8477793782007880969..comments2023-09-01T02:29:46.008-07:00Comments on Oh My Aches and Pains!: Question of the Week: What Is Your Current Opinion of the NFA?Anonymoushttp://www.blogger.com/profile/02063470589933197328noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1190707857355048493.post-59185342596256567222011-03-19T12:27:58.012-07:002011-03-19T12:27:58.012-07:00As I lie in bed catching up on all that's been...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. <br /><br />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.Jenifer L.http://@jeni_nolanlewisnoreply@blogger.comtag:blogger.com,1999:blog-1190707857355048493.post-62250978635386834642011-03-14T12:51:16.197-07:002011-03-14T12:51:16.197-07:00I got there coming clean e-mail too. I don't k...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!Iesadorahttps://www.blogger.com/profile/12253476548749116421noreply@blogger.comtag:blogger.com,1999:blog-1190707857355048493.post-68415910716708963122011-03-14T12:24:58.752-07:002011-03-14T12:24:58.752-07:00http://confessionsfromthefibrofog.blogspot.com/http://confessionsfromthefibrofog.blogspot.com/Fibrofoghttps://www.blogger.com/profile/12253540373445856306noreply@blogger.comtag:blogger.com,1999:blog-1190707857355048493.post-46628080367269999362011-03-14T12:22:46.411-07:002011-03-14T12:22:46.411-07:00I'm glad they finally came clean. Too bad it h...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!<br /><br />Joy<br />http://confessionsfromthefibrofog.blogspot.com/Fibrofoghttp://confessionsfromthefibrofog.blogspot.com/noreply@blogger.com