July 14, 2011 — For the first time, there is now a play that dramatizes the real-life stories of disabled Americans stricken with the little-understood illness called chronic fatigue syndrome (ME/CFS). This play can be performed in a “guerilla street theater” type of dramatic performance, open to the public and passers-by, or in an indoor setting, such as a community center or theater, perhaps as a fundraiser for organizations conducting research into the cause, treatment and cure for ME/CFS.
CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal neuro-immune disease afflicting one million Americans and 17 million worldwide.
The script, titled I REPRESENT: INVISIBLE NO MORE, is a collection of true stories from people living with ME/CFS (chronic fatigue syndrome), and available to local community leaders and/or professional theater directors to use with community volunteers or professional actors.
Because the patients are either too sick to leave their homes or too sick to engage in public speaking ventures, the actors will represent them and share their poignant, sometimes funny narratives — hence the name of the play, I REPRESENT. The subtitle, INVISIBLE NO MORE, reflects the fact that the voices of homebound Americans will be heard for the first time in a theater performance
The public performances, when done as ‘street theater,’ where passers-by can stop and watch for as long as they want, offer the public a chance to hear what the lives of these disabled Americans are like.
“ME/CFS is a devastating disability. Many patients spend 5, 10, 20 years in or near bed, too weak to work, go to school or have a social life. Being homebound renders them invisible to the general public, allowing for little public awareness about the illness and many misconceptions. We hope to change that.” — Playwright Rivka Solomon, herself homebound/bedridden for much of the past 21 years.
In 2010, the National Institutes of Health allocated only $6 million to ME/CFS research. The motivation for this play is triggered by that lack of funding, along with a ground-breaking 2009 research paper published in Science, linking the illness to a newly-discovered HIV-like retrovirus, XMRV. The study was conducted by the Whittemore Peterson Institute, working with the National Cancer Institute and the Cleveland Clinic.
For decades, the cause of this illness (an illness that is “invisible,” like multiple sclerosis, lupus and early HIV retroviral infection) has remained elusive. Now finding a possible retroviral cause, XMRV, for ME/CFS is motivating patients to be more public.
ME/CFS first gained national attention around the same time as the AIDS epidemic, in the early 1980s. But as HIV/AIDS groups were able to organize, protest and demand respect, attention and funding, ME/CFS patients, too weak to function, crawled to bed.
Doctor Nancy Klimas, researcher and clinician at the University of Miami, recently stated in The New York Times that her ME/CFS patients are sicker than her HIV patients:
“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV.”
Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care and ineffective (sometimes harmful) treatments. The disease occurs in people of all ages, from children to seniors, and also has occurred in cluster outbreaks from Nevada to New York.
CONTACT: Rivka Solomon
Rivka (at) ThatTakesOvaries (dot) org