VIA The Blue Ribbon: The ME and CFS Documentary Project Unity of Purpose is its Own Megaphone When people ask us what we do for a living, we often say we’re making a film about neuro-immune diseases. If you want to win the conversation and convert a new believer, you have to start off on the right foot. Fibromyalgia, Gulf War Illness, ME/CFS, Lyme disease, MCS, autism, MS, and others are all obviously distinctly different diseases with different etiologies. However it’s worth mentioning them as a group for reasons beyond just preventing people from bringing up the same old response that CFS sounds like people who are lazy or crazy. Grouping these neuro-immune diseases together is important for so many reasons. Consider: The Political: Irish MP Basil McCrae approached Dr. Judy Mikovits at a 2011 research conference, quickly grasping the importance of joining several neglected diseases together. Mikovits recently recalled that he suggested the prospect of potentially “millions of voters spoke volumes about turning political stigma into a powerful lobby.” Similarly, the Alabama State Senate passed a resolution this year calling for the creating of a neuro-endocrine-immune clinic in their state. When you get your numbers large enough, funding and progress look far more feasible. The Clinical: Most physicians we’ve visited on our nationwide journey have all combined autism, ME/CFS, Lyme, fibromyalgia, and MCS into viable medical practices. This is good for several reasons. First, PCPs and GPs often encounter these complex, chronic diseases but are unable to treat them; they need an experienced hand to whom to send these hard cases. Second, because co-morbidity is so common in these diseases, you need someone knowledgeable about all the diseases to sort out where a given patient falls. The Academic: Each neuro-immune diseases suffers from a lack of adequate funding. Exploring ways of piggybacking research into one disease into research into another becomes a crucial win-win. It makes more out of less. A great example is how Dr. Nancy Klimas and her team pulled down Department of Defense funding to study Gulf War Illness but also incorporated ME/CFS patients as a comparison group in the same study. A more robust neuro-immune disease alliance would make more of these Trojan Horse tactics possible. Each of these groups feels invisible, neglected, or orphaned. They’re in need of a megaphone. That’s why we need a coalition of the invisible. Unity of purpose is its own megaphone.
Posted on: Sat, 02 Nov 2013 10:13:39 +0000
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