Submitted by Guest Blogger, Carollynn Bartosh
Five years ago when my mom went on hospice for COPD, she wanted to do whatever she could to help the ME/CFS cause for my sake. She was nostalgic for the years before I got sick when I was a busy professional, traveling for work and hiking vacations, for how much I had loved to run. She knew what I had lost to this illness. I asked my infectious disease doctor, John Chia in Torrance, CA, if there was any way to get blood or other samples from her to save for future studies, but there was no group doing so, no uniform means of collecting, cataloging, and preserving. He knew that was on the horizon, but it would not come to be in time for my mom to participate. Then a year ago, at a Catalyst Cafe here in Los Angeles, my husband Blake and I learned about the BioBank. We became the 500th people to sign up; me as a patient and him as a healthy control.
I’ve been disabled for nine years now, though through all I’ve learned about ME/CFS it was probably brewing in me since childhood, and it came close to taking me out of school or the working world a few times long before it finally did. I’d like to think I would have made different choices—about over-work, for example—that might have made a difference in my long-term health had I known. I’ve also come to wonder if ME/CFS runs in my family, for my mom’s mom spent almost all of her time in bed from her 40″s on with an illness that was never diagnosed, coming to family meals across the small house with huge effort, rarely leaving home. Our verdict was “she’s just depressed.” Perhaps she was. But maybe there was more to it.
The first few years of my illness were frightening not only because of the variable symptoms I experienced and the reality of loss sinking in, but also because there was so little solid information available to tell me what was happening and, with no real treatment, how to at least better manage it. What was out there for the general public (and the general practitioner) tended toward the “all in your head” line. But the CFIDS Association challenged that. They were the first real CFS outpost as advocates for the sick, in time organizing a new charge for research, funding studies and presenting results through webinars, and creating a BioBank of samples to give cohesion to studies for years to come.
The webinars created a palpable shift toward hopefulness for me and the patient community. I could log on from my futon, email in questions in real time. Seeing the studies synthesized graphically was part it, for I was now able to print out those graphs to illustrate for my family and friends what it feels like to have this illness and show the differences–dozens of biomarkers–between me/us and tired, over-worked healthy people. But it was also seeing photos of the researchers and hearing their voices that was so reassuring: smart, compassionate, people were on the trail, help is on the way after all.
The validation that comes through the webinars has been some of the best medicine I”ve received. There was connection to the other listeners, knowing that 400 or 600 people around the country and world were hanging on this information as I was, and that more would find this help through the Association website. The questions asked by my fellow travelers on this illness path astounded me by the level of medical knowledge attained in our tenacity to help ourselves. I no longer felt alone in my earnestness as well as the illness. Yet as important as validation is it can’t address the larger take-away from the webinars: the understanding of this illness is still in the basic science stage. We need more studies, studies based in the BioBank.
A recent CFIDS Association survey showed that the median age of on-set of ME/CFS is 32; the average length of illness for those taking the survey was 20 years. I’ve been disabled by ME/CFS for half of the twenty years Blake and I have been together. We don’t have kids, but my sisters do and they are all less than a decade away from 32. They are zooming into professional lives full-speed, just as I did. They’re planning travel, families, long careers and full lives. I want to be sure that they can. The BioBank is my investment in their future.
To find out more or to begin the enrollment process in the BioBank contact:
Gloria E. Smith
SolveCFS BioBank Coordinator