Unite To Fight!
Patient Advocates Making a Difference
Wisconsin ME/CFS Association, Inc.
Before I became too sick to work, I was an "at risk" high school teacher. I spent 10 years creating programs and working with kids who learned self destructive behaviors to get some attention in families where violence was normal and good role modeling absent.
I was a "disabled too sick to work" person collecting disability. I felt less able to be an equal in the eyes of others. I was a person with a "mysterious illness" a group more commonly known as the invisibly ill.
In 1987, I co founded the Wisconsin Chronic Epstein Barr Virus (CEBV) Association. We had an active board with numerous activities underway. By the mid 90's, we set up a WI support network with 27 CFS groups meeting monthly
In 2003, something about National Institutes of Health ( NIH) Funding caught my attention, so I set about looking at the number of grant awards made to CFS researchers. With so little money and so few new grants per year awarded, how could we, the patients, expect to have better treatment in our lifetime? From 2004 through 2010 I went to Washington to give testimony to the Chronic Fatigue Syndrome Advisory Council CFSAC) about lack of funding. In 2010, I finished a 10 year summary of NIH CFS funding patterns. The results are dismal. (see Pat's recent CFSAC testimony - speaker 7 afternoon session)
My son died suddenly in 2005 of Viral Myocarditis. He is among many NOT reported as a death due to or related to CFS because CFS is not a reportable illness and is not considered life threatening.
Recently, I was one of two patients to accept a nomination as a patient advocate for a Steering Committee. This group has been working to create an agenda for the State of the Knowledge Workshop to be held on the NIH campus April 7 and 8, 2010. I felt honored to be nominated by so many people across the country and it may well be that I will have the opportunity to speak at one of the sessions. If I do, you can be sure that I will do the best I can to represent YOU.
Lastly, I KNOW we are finally moving forward with the science and with patient advocacy. I hope you realize that YOU are pushing an agenda called ACT NOW. Every letter you send to a political representative may be answered with a canned response, but our collective voice matters. WE CAN change the dynamic that enables our vulnerability and invisibility. Stand firm. Support RMCFA any way you can.
Read Pat's complete story here