Broader Q&A

Rik Carlson, Michael Thurston, Dr. Alan Gurwitt

Rik: Vermont CFIDS Association has developed a focus on medical education. Components include: developing a relationship with the Vermont Department of Public Health (DPH); developing a medical scholarship program; developing a patient registry; and working with DPH on physician education with Dr. Kenneth Friedman et al. (including Dr. Alan Gurwitt). A detailed 3-part interview with Dr. Kenneth Friedman is available at the Vermont CFIDS Association website.

Rik highlighted the critical need to change the name CFS to something more descriptive like ME/CFS, by putting the emphasis on ME, the term used internationally for CFS. He noted the inter-connection of overlapping illnesses like Fibromyalgia, Gulf War Syndrome, and Lyme disease.

Rik suggested we consider approaching pharmaceutical companies, like Pfizer Drug Co. (makers of Lyrica) to help fund education for doctors, medical providers and patients. He also suggested we consider nutraceuticals as supplements. They have helped him.

Alan: There are many people with ME/CFS—at least .42-1% of population have ME/CFS, and 2-3 times as many have FM. Alan is working with Dr. Kenneth Friedman (from the New Jersey CFS Association) and a group of international clinicians to create a Primer on ME/CFS for health care professionals, initially for ME/CFS in adults and hopefully a second Primer for ME/CFS in children.

All panelists urged the audience to get involved in Advocacy/ Public Policy efforts at local and national levels. It can start with you, your family and friends, and local support groups getting involved. It can expand to local and regional medical providers and public health departments.

Most Public Policy on ME/CFS is set federally. Federal Legislators control research funding at National Institutes of Health (NIH) and Centers for Disease Control (CDC). The panel urged that patients with these illnesses get involved in national advocacy campaigns like: CFIDS Association of America (CAA), International Association of CFS/ME (IACFS/ME), and/or Chronic Fatigue Syndrome Advisory Committee (CFSAC).

Rik noted that our appeal for action is profound. It is very true that each one of us can do something, anything from the confines of our illness (i.e. letter writing) and it is important for us all to understand that even the smallest effort will have impact and garner results. As it's been said, our strength is and will be, in our numbers. Turning the tides of modern medicine is no small task.

For further information on the film, go to the INVISIBLE website.