Recently ProHealth helped feature the Fibromyalgia and Family Impact Survey, developed by Karen Lee Richards, a leading FM patient advocate, and U of Pittsburgh fibro/pain specialist Dawn Marcus, MD. They hoped to gather good data for an article to help doctors understand what patients really endure, but they were astonished by your response.
Here is Dr. Marcus’s personal note of thanks, to share with you:
June 20, 2012: This spring, we asked the fibromyalgia community to help us out by sharing their experiences about how fibromyalgia may have affected their relationships with family and friends.
We had hoped for a strong response of about one to two thousand individuals with fibromyalgia completing our survey. We have been positively blown away by the incredible response we received with over six thousand survey participants.
Our final count was 6,126 people with fibromyalgia completing the entire survey!
This overwhelming response will really help us feel like we've been able to tap into an important segment of the fibromyalgia community and we're getting the results together now.
At the end of the survey, people were given an option of telling us important information that we hadn't asked about in the survey questions. A total of 3,597 people shared their personal struggles and triumphs in this question.
These comments gave me a glimpse into the depths of the impact that fibromyalgia has on patients for which I'd previously been fairly unaware.
I know this information will be extremely informative to the medical community, many of whom, like myself, have probably neglected several very important aspects of fibromyalgia impact. As a doctor, this survey is incredibly eye opening. I thought I spent a lot of time talking with my patients and finding out what's impacting them and I was amazed by the depth of isolation and frustration described in these free responses. Thank you so much for sharing with us.
The survey was a fairly lengthy and delved into personal aspects of people's lives and we are truly indebted to all of you shared your stories and experiences with us. We wanted to be sure to thank each of you for participating in this survey. We are hoping to share these results with the healthcare community and I know the information will be as eye opening for them as it has been for me.
Dawn A. Marcus, MD