Patients should take more responsibility for their overall health according to Jan Chambers, founder and president of the National Fibromyalgia and Chronic Pain Association. Her own life changed when she was overcome with undescribable pain in 2005 following surgery and since then she has traveled thousands of miles, met with federal and state agencies and other organizations as she searched for help.
On KVNU’s Crosstalk program Tuesday, Chambers said more research is needed because right now Fibromyalgia gets only $1.50 per patient spent on research for Fibromyalgia while Parkinson’s Disease gets $172 per patient. Yet she says about one million people have Parkinson’s and close to 10 million have Fibromyalgia.
Chambers said those with Fibromyalgia or chronic pain illness are invited to share their stories next April to the FDA.
“So sharing your story,” Chambers said, “letting people know that this is affecting your life and how it affects your loved ones’ lives also, is the kind of information they need to justify increasing that research funding and asking Congress for more research funding so we can stop the exorbitant costs of Fibromyalgia.”
The Providence resident said she will continue to work for changes that help people with chronic illness and support the people who suffer.