Dear Dr. Marcus & Karen,

As a Fibromyalgiac and someone who also responded to the survey I want to say how awesome it is that Dr Marcus cares enough about us as a whole to thank us, it's a comforting thing to know that there are such sensitive doctors working on the causes and symptoms of FM.

There is never enough time in a doctor's appointment for those dealing with FM to express and share all the impacts this illness has on our bodies and our lives. And that is no one's fault. It is what it is. But this survey helps fill in those blanks that you may not even have known were there. Having platforms such as this survey to express individually what is important is a blessing. Knowing this information will be passed among other providers is valuable to all involved.

I am most interested in what my sisters and brothers shared in their comments they submitted. My hope is that there will be a follow up that would allow us to share between one another what was felt important enough to be submitted. If this is being shared with the medical community my hope is that it will be shared with at least the 3,597 persons who shared their thoughts and personal experiences as well. We as the patients may find suggestions and tips, but even just as important is to find that you as a person living with Fibromyalgia are not alone in what you are dealing with.

Thank you for the interest and the support. We need more like you in the trenches with we, the persons living with the symptoms, trials and tribulations of FM.

Tjhelser

tjhelser@aol.com

Dawn Marcus

6/20/12 3:40pm

Thank you for your kind words. As we put these data together, we will be preparing them for a manuscript to submit to a medical journal and will also put together some pieces for the fibro community. It was amazing to me how similar many of the free response comments were and, despite the frequent similarities, how alone and guilty many people seemed to feel. I wholeheartedly agree that, for many people, seeing there are others who share similar problems, frustrations, etc. could be very helpful.Once we get the data together I will do my best to get the word out to both healthcare and patient forums. Thanks again!

 

tjhelser

6/20/12 4:39pm

Thank you so much Dr. Marcus for your quick response. I look forward to reading what is published in both communities.

Your concern is as I said admirable. I wish this would rub off onto your colleagues in my area of the country. We are still being treated much like second class citizens by many physicians here.

My hope is that this is slowly changing and reading your work helps deepen that hope.

Thanks so much~