July 13, 2012
I became sick in 2003, diagnosed in 2004 with CFS, Chronic Fatigue Syndrome, and I've been disabled by it since. From the beginning, I wanted to learn everything I could about the illness to help both myself and my doctors to find the leading voices in research and treatments for the condition was obscure at best and even maligned and disbelieved. Early on I was glad to discover the CFIDS Association of America on-line--and that there was a better name for what I have: Chronic Fatigue Immune Deficiency Syndrome. "Chronic fatigue"--which without the capital letters is a symptom of many different illnesses that are not the same disabling and complex disease as CFS. "CFIDS" was coined at a time when another Immune Deficiency Syndrome was being taken very seriously by the medical community and government research funders, and comes closer to capturing the severity of this illness. Things like the name of an illness may seem like splitting hairs to someone outside of the patient community, but it has mattered greatly for generating funding as well as basic empathy, and the CFIDS Assoc. has headed the charge for patient advocacy since long before I became sick. Their advocacy resources were really helpful for defining the illness, the history of it and the case definition, info to share with family and friends as well as doctors, how to manage daily living--things that people disabled by illness need. Over time I came to appreciate the difficult task they had of trying to push government institutions and drug companies to respond to this health crisis; what they couldn't describe in their materials was that they were as frustrated and disillusioned with the system for funding research as the patient community was. Us PWC's ("People With CFS") began to dig more deeply into the science of the illness trying to figure out ourselves what our medical leaders weren't, and in the first few years of my illness the CFIDS Assoc. wasn't so strong in the detailed scientific studies that many of us wanted. However, in the last few years they've made a huge shift in that direction, funding research themselves and connecting researchers and their studies for exponential good. It's palpably exciting. The webinars the CFIDS Assoc. present lead by the scientist and clinicians they've funded have been the best medicine I've received. Suffering through the first years of an illness so misunderstood and understudied was an insult on top of the injury of the illness itself, but listening to the researchers shows that our suffering has not gone unnoticed; smart and kind people are on the trail, help is on the way. We can focus on rest and healing and not having to prove that we're sick. Through no fault of the CFIDS Assoc., disappointment naturally will follow the hopefulness the webinars elicit, for while the research validates and corroborates the symptoms we feel it's clear that the science has a long way to go before causal agents are pin-pointed or the resulting multi-systemic syndrome is unraveled enough for treatment interventions. Still, this validation--for the scientific world out there as well as the inner psychological landscape of us PWC's--is technically and organizationally the right start. On a practical level, printing out graphs and diagrams from the webinars gives me something to show not just friends and family but also my doctors the bio-physiological differences between tired healthy people and PWC's. Earlier this year I was thankfully able to get to a CFIDS Assoc.-sponsored gathering in my city called a "Catalyst Cafe," where Pres. Kim McCleary and Scientific Director Suzanne Vernon rolled out their new initiative/organizing principles for a Research Institute Without Walls. Along with others in the broader medical community, they realized that the paradigm of one-off studies performed with widely divergent criteria in isolated bursts of interest from a variety of institutions have lead to "apples and oranges" results in the medical literature and few gains that actually help patients. Creating a new paradigm of patient-centered research, they outlined how recent CFIDS Assoc. grantees' studies (the ones that have been so validating for me in webinars) lead to additional and greater funding from outside for further studies--real momentum rather than the stagnant efforts of government groups! They also outlined how the current and future grantees will collaborate and communicate while utilizing a BioBank of samples so that they and the medical literature will soon talk "apples and apples." My husband and I have just volunteered to be part of that BioBank, to do what we can to help the CFIDS Assoc. studies and advocacy for this group is now way ahead of anything I hear coming out of other sources, including the NIH and CDC. Through their website and newsletter, I keep abreast of these big picture developments, but also find meaningful connection with others with this illness through their links to some of the best CFS blogs. This illness is isolating, but these resources help me to feel a community.
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MY ROLE:Client Served