To the editor:
Today is the 25th anniversary of the International Awareness Day for Chronic Immunological and Neurological Diseases, which includes myalgic encephalomyelitis/chronic fatique syndrome, fibromyalgia and chronic Lyme disease.
I wanted people to be aware of the debilitating nature of this disease which has no known onset or cure.
As many people know, my daughter Rebecca has had myalgic encephalomyelitis for over six years.
She was a sponsored triathlete and an Ironman and was in terrific condition when she got the disease after a prolonged bout of mononeuclocous.
ME/CFS is a complex and chronic disease with a serious impact on one’s quality of life. ME/CFS symptoms, which can often be made worse by standing upright, include: extreme exhaustion, non-restorative sleep, brain fog, post exertional malaise, joint pain, sensitivity to light, sound, odors, chemicals, foods and medications, abdominal issues and more.
Unfortunately, there is comparatively little research funding being given for this invisible disease. Approximately 2.4 million people in the United States have ME/CFS, and the condition affects millions more worldwide, yet the National Institutes of Health reported that in 2015, the ME/CFS research budget, ranked in order by research dollars, was 249 out of 265 diseases funded — almost at the very bottom. In actual dollars, government spending on ME/CFS is less than is spent on hay fever.
The Open Medicine Foundation has brought in top experts from a variety of fields for a new research project to understand and find a cure for this terrible disease. They need more funding to speed the process of this research.
On this day, we especially want to raise awareness about this disease and the need for support of such research efforts. Go to www.omf.ngo to learn about more about ME/CFS and the Open Medicine Foundation. Thank you.
Post Script: Betsy and her husband will be walking across England to raise funds for OMF’s research. If you would like to support their 200 mile journey, please note Rebecca Devita’s name in the tribute line.