On September 19, 2019, thirty Fibromyalgia advocates from the around the country descended on Capitol Hill to speak with our representatives and senators in a total of fifty-four meetings. We discussed an increase in Fibromyalgia specific research, medical education and updates to federal government websites. Some of them have not been reviewed since 2014. We pointed out the inconsistencies across the CDC, NIH, ACR and even Mayo clinic websites on definitions, prevalence and diagnostic criteria.
We were well received by many of our legislators and they were excited to know that many of us were in Washington, D.C. for the very first time. They were also very surprised that funding for Fibromyalgia through the NIH was going to decrease. As it stands our NIH-projected funding for Fibromyalgia in 2020 is $12 million which will be a decrease from previous years which stood at $14 million. Our legislators recommended we ask for an increase to $20 million which were told was a drop in the bucket for the amount of money getting spent on research. The challenge for our advocates is now figuring out who decided to decrease the budget spend for Fibromyalgia. Was it Congress or NIH?
With all the information we gathered from the meetings it was a good start to more Fibromyalgia advocacy. The best part was having all the advocates meet each other. Many have known each other for many years but never have met in-person. Wonderful things happen when you get a group of amazing and positive people together for a great cause!