The Massachusetts CFIDS/ME and FM Association warmly welcomed Rik Carlson, president of the Vermont CFIDS Association, and Michael Thurston, videographer, for the Massachusetts premiere of "INVISIBLE". This event, as part of the Association's 2010 series of educational forums, was held at Morse Institute Library in Natick, on October 30, 2010. The film was received with strong support and interest as well as great appreciation for the efforts by its filmmakers.
Imagine what it’s like to be so sick you cannot function. Imagine there is no known pathology for your illness, only symptoms. Imagine you are too weak to find your own voice...and because you are silent and confused, your physician says “it’s all in your head.” Imagine. Because your illness is invisible, you disappear.
INVISIBLE gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your neighbors as they talk about living with Chronic Fatigue Syndrome, (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) , Fibromyalgia (FM), Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME). The disease with a thousand names and no known cause or cure.
You will hear the devastating impact this illness wields, not only for those who suffer the symptoms, but for those who are left trying to understand what their loved ones are experiencing. This is a film for millions of people around the globe from your Vermont neighbors around the corner...tenacious Vermont neighbors who struggle against unimaginable odds to make their voices heard.
They are just like us, except they got sick, and they are tired of being INVISIBLE.
Discussion on the Background of the Film
Rik Carlson, Founder Vermont CFIDS Association
Why did you make this film? “Because CFIDS is dismissed, relegated to hysterical women, passed off as depression, and not taught in medical schools, in most, if not all cases, patients worsen dramatically ... While this disease alone is immensely debilitating, the disregard and misdiagnoses by people of authority causes even more catastrophic results. When the true disease is denied, families are destroyed. When it’s accepted, recovery programs can be developed and healing can begin."
Who is this film’s audience? “It is very important to share our personal stories. This film is for parents, spouses, brothers, sisters, friends, neighbors, employers, and physicians. Let the healing begin."
Michael Thurston, Vermont Filmmaker
"I am lucky enough to be well. I have watched my friend, Rik Carlson, struggle for years to return to his normal life. I knew him when he was well. The difference in the Rik I knew then versus the Rik I know now is so dramatic, had I not known the before and after, it would be hard to believe."
"INVISIBLE is the accidental movie. We aimed cameras at people who had stories to tell, not knowing what they would say. They spoke through the depths of illness, straight from their hearts. Little did any of us know how powerful their collective statement would be. None of them are INVISIBLE now."
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 CFS/CFIDS/ME — at least .42-1% of population have CFS/CFIDS/ME, 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 CFS/CFIDS/ME 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.