Today I was blessed to participate and be a part of what I believe was a crucial and very important webcast meeting hosted by the United States Federal Drug Administration (FDA) for Fibromyalgia patients. It was ground breaking. What an exhilarating experience!
The FDA Fibromyalgia Patient-Focused Drug Development discussion topics focused on disease symptoms and daily impact that matter to the patient and the patient’s perspective in current approaches to treating fibromyalgia. It was an awful lot of information to take in at one time and the response was overwhelming, but it was certainly needed.
For me, as a Fibromyalgia patient, it was a very emotional meeting where at times I cried as I listened to and heard some of the most powerful, riveting testimonies of patients who suffer with Fibromyalgia and chronic pain. One patient panelist said to the FDA, “Thank you for listening to us. People don’t listen.” I cried. I realized nothing could ever compare to what I am going through as each person exposed themselves to the world and gave a personal, sometimes graphic, in-depth account of their experiences and what they have gone through. As well as listed symptoms I could have never imagine existed.
The best part of this meeting was having the ability to be informed about Fibromyalgia in its entirety and gain a greater awareness of the state of my own denial as I heard countless stories of symptoms that were similar if not exactly like mine that I lived in denial of. Understanding, it was not all in my head. This is really what I suffer with and now I am clearer on what’s causing it; thankful.
While today’s meeting was 4 hours long and my body felt every bit of its effect with swollen feet, neck, and hands, a really bad headache, and my anxiety that was shot out the window, it was well worth it. I would not have missed it for the world!
The facilitators and panelists that included patients as well as Presidents and Executive members of some well-known pain organizations did an amazing job! I was thrilled to hear and see Jan Chambers, President of National Fibromyalgia & Chronic Pain Association and Gwenn Herman, Executive Director of Pain Connection as panelists of the second topic discussion. The meeting went well and according to schedule.
The one thing that was disappointing and troubled me most is that there was no news mention of this meeting or announcement by any major television stations or across social media with the exception of some pain organizations. Had I not heard about the meeting from National Fibromyalgia & Chronic Pain Association (NFMCPA) months ago, I probably would not have known about it nor would I have had the chance to be a participant. This saddens me because I believe events such as this is newsworthy and deserves the attention it clearly did not get today. Hopefully, in the future I pray something changes so that more people will have the chance for involvement and given the opportunity to be a part of change.
Overall, I believe it was a very productive meeting and I look forward to the results. There will be a transcript available in a few weeks of which I will keep an eye out for and will either share a link or the actual transcript for those who wish to view information from the entire meeting.
Today, I felt like I belonged even if I was not there physically. It meant the world to me. I am truly grateful. I thank God for blessing me with enough strength to make it through the entire meeting. It was my first meeting via webcast and definitely will not be my last, give or take some adjustments I will need to make in the future to accommodate for the pain and discomfort I endured as a result. I do hope my contribution and input today along with my comments my family helped submit two days prior will make a difference in the lives of many who suffer with this debilitating disease.
To the FDA and all of the patients, caregivers, medical professionals, organizations and anyone who attended either in person or via webcast, on behalf of Fibromyalgia patients across the world, I thank you!
Until we meet again …. I pray you have more pain-free days filled with laughter, joy, and praise!
Be blessed! –JD