Wednesday, June 11, 2014

OHSU-NFMCPA fibromyalgia survey

I don't talk about my Fibro too much, but it's altered my life significantly since the symptoms began in late 2003 and early 2004. One of the things I'm super thankful for is that I don't have severe pain and am not disabled like nearly a quarter of Fibro patients have and are. Most of my symptoms fall into the scope of this survey that was done, symptoms other than pain. If you are interested in finding out more about the study, here is the link:

In preparation for the Food and Drug Administration's Public Fibromyalgia Patient-Focused Meeting December 10, 2013 (rescheduled to March 26, 2014), the National Fibromyalgia & Chronic Pain Association in partnership with Dr. Robert Bennett, Professor of Medicine at Oregon Health & Science University, published a nationwide survey to capture important scientific information to report at the FDA meeting.  Robust community participation in the survey during a short time period indicated strong support for more research on fibromyalgia.  Dr. Bennett prepared a three-part series of the results for the NFMCPA for education to its constituents and the public.  These valuable insights will also be used in further research at OHSU as well as being submitted for publication in a peer-reviewed professional journal. This is Part 1 of that 3-part series.

During a couple of weeks at the end of November 2013,  NFMPCA members looked at a questionnaire designed by Dr. Rob Bennett. The intent of this questionnaire was to provide information to the Food and Drug Administration (FDA) on common symptoms encountered by fibromyalgia patients, other than pain. This information was to be presented by Jan Chambers at an FDA meeting in December 2013, but due to bad weather the meeting was canceled and was rescheduled for March 26, 2014.  This survey provided us with a lot of new and important information regarding the suffering endured by fibromyalgia patients.

1 comment:

  1. Sarah, have you ever looked at nutrition to help with your Fibro symptoms? I read plenty where diet has some affect on that. I have a couple of friends here who have that syndrome (can't imagine what you all go through) so I've researched for them on nutrition.