“Painful as it may be, a significant emotional event can be the catalyst for choosing a direction that serves us — and those around us — more effectively. Look for the learning.” –Louisa May Alcott
Recently I attended a gathering in Los Angeles presented by the CFIDS Association of America (CAA) called “Catalyst Café.” Having just begun a new blog after several years of not being in close contact with the CFS community, I was anxious to re-connect and learn about new advances in the field. I assumed the event would include a presentation by Kim McCleary, President and CEO, and Suzanne Vernon, Ph.D., Scientific Director (each of whom I had never met before); but beyond that, I had no idea what to expect.
The event was held at a private home in the hills, and when I arrived people were mingling. I looked around and wondered whether the people I saw were donors, medical professionals, or CFS patients like me. I suspected there weren’t many patients because people “looked healthy!” It turned out that most of the attendees were, in fact, CFS sufferers—many of whom had been sick for more than a decade. My perception—as I learned later from talking with other patients—was wrong, which only served to emphasize how invisible our illness really is, even to those of us who are well aware of it.
As everyone settled into seats, the presentation opened with a very moving video that asked people with CFS the question, “What would you do if you were completely well tomorrow?” As I watched it, unexpected tears began to well up in my eyes. It affected me so strongly that it was all I could do to muster the composure to focus on the rest of the presentation.
The flickering of hope
It’s difficult to describe what I felt as I listened to Kim and Suzanne speak about the lives destroyed and pain endured by CFS sufferers and their families. I’ve spent so much time trying to hide, tolerate, minimize, live with, and adapt to chronic fatigue syndrome and fibromyalgia (FM), it has become like a familiar drumbeat of hopelessness that is always there in the background. Life goes on, other people don’t really understand, and despite my best efforts, I surrender to the reality of “the way things are.”
I like to think of myself as an optimistic person. But without being fully conscious of it, somewhere along the line I had become resigned to a belief that treatment for CFS/FM won’t really change in my lifetime. Without a diagnostic marker, and with debates about whether the illness is “real” still in the media, I saw no signs of improved medical care on the horizon, let alone a cure. My focus has been on coping with CFS/FM and learning to live a meaningful life in spite of illness. But what if things could change? What if there was a new way to approach the research and treatment of this illness? I’m excited by what is going on at the CFIDS Association and what could emerge that has the potential to affect all of our lives. My goal in writing this is to share some of the hope I felt with everyone who didn’t have the opportunity to be there that day.
What’s so different about the new research initiatives?
The CFIDS Association is striving to transform research by breaking out of the conventional model and shifting from passive research partners into active collaborators. The goal is to build a critical mass of rigorous research that defines the biological basis for CFS and leads to improved methods of diagnosis and treatment. The Association’s latest initiative, the Research Institute Without Walls (RIWW) is a uniquely collaborative approach that encourages studies to build on one another. Key aspects of the Association’s program include:
• An “army of volunteers”
The CAA is building the SolveCFS BioBank, a patient registry and depository that collects and stores clinical data and biological samples of CFS patients and healthy controls. Instead of researchers having to start from scratch to identify and recruit study participants, they can call upon the BioBank to mobilize a group of pre-enlisted individuals who are committed to furthering CFS research.
• Communication and integration
In traditional research practice, scientists in different institutions and geographical regions tend not to communicate with each other, particularly across scientific disciplines. In the Research Institute Without Walls (RIWW), researchers are networked and integrated to ensure collaboration and a constant exchange of ideas.
• Data accessibility and control
Conventional research models don’t necessarily require building a centralized base of knowledge, and as a result, scientific data from past studies is not easily accessible and transferable. The data from one study “goes away” when a different study is begun. Now the CAA can maintain access to data collected over time, rather than rely upon “one-and-done” studies that don’t integrate and build on each other.
A New Paradigm
According to Suzanne Vernon, the pipeline for bringing a new drug from discovery to market is at least ten to fifteen years, at a typical cost of 80 million dollars. The CAA’s more nimble approach is innovative in that it leverages smaller funds to yield greater scientific returns in a quicker timeframe. The result, says Suzanne, could be “increased efficiency and cost effectiveness by orders of magnitude.”
It is clear that a paradigm shift is needed in how we research and treat disease—not just CFS, but a host of other illnesses too. The Association has joined other organizations on the cutting edge of medical research who are changing the way research is conducted. As Dr. Vernon said in her presentation, “This is a movement that is going to be infectious for a lot of people…in a good way!”
What about Fibromyalgia?
Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are overlapping illnesses that frequently occur together. Studies have estimated that as many as 70% of CFS patients also have fibromyalgia, reinforcing the belief that there might be a common pathophysiology in the two conditions. As Kim McCleary points out, “the ‘label’ that individuals identify with—whether it’s FM or CFS—often depends more on the doctor that diagnoses them” than on anything else. The kind of research being done by the CFIDS Association has the potential to benefit CFS and FM patients alike. In fact, many of the CAA-funded studies include FM patients, either as a separate sub-group or a co-existing diagnosis.
We are not alone
As Kim and Suzanne presented their vision with such heartfelt passion, their enthusiasm was palpable. It felt a bit surreal to hear them validate and give voice to the things I had become used to minimizing and denying in my own mind. As I let the words seep into my heart and mind, where there had been doubt, I felt hope. Where there was disillusionment, I felt inspiration. Most of all, I had the powerful sense that I was not alone.
What has always struck me as ironic is that many of the people who work to improve the lives of CFS/FM sufferers are sufferers themselves. Burning this candle at both ends, we get exhausted, become sicker, or simply can’t sustain the energy and resources we need because ours are already so limited by CFS/FM. To see two people who aren’t sick bring all their healthy energy and vitality to this cause was a revelation that elevated my spirits. It lifted the burden of feeling that we have to do it all ourselves, with no one to help us.
However, the CAA’s sharpened focus on research has left a gap in the area of patient support, which both women expressed concern about when I spoke with them afterward. I believe that’s where we come in. We can reach out and lift each other up. We can support the efforts of those who are working to make change. We can strive to increase awareness of the devastating consequences of this illness—and the great strength and courage of the people who battle it every day. We can do all these things, until there is a cure.
What else can we do to help?
1. Consider applying to be part of the biobank.
Extensive information is provided on the Association’s SolveCFS website. They need healthy controls and family members of CFS patients, too, so this could be another way to engage our loved ones and encourage them to have a stake in CFS.
2. Donate what you can. Ask friends and family to donate.
Keep in mind that every little bit helps. After the presentation, Suzanne told me, “One woman at the event was so jazzed she said she is increasing her monthly donation from $5 to $6. She acknowledged that it wasn’t much, but that was all she could do. It about made me cry.”
3. Spread the word and increase awareness of CFS and fibromyalgia.
4. Get everyone involved.
Even those who are not necessarily comfortable “going public” about CFS can still be part of an extraordinary research effort that has the potential to change the practice of medicine on a broad scale.
5. Attend a Catalyst Café event.
If you want to get on the invitation list for an event that may be coming to your area, sign up for the monthly Catalysts in Action newsletter by sending an email with “SUBSCRIBE” in the subject line.
My experience at this event affected me in a deep way and on a variety of levels. For me, the CAA’s vision and enthusiasm really was “infectious.” Imagining advances that would change the course of CFS/FM—in our lifetime—was a new experience. Suddenly, in that moment, it didn’t seem impossible to me. What made the difference was the realization that perhaps we—those suffering with this illness—don’t have to carry the torch ourselves all the time. We are in this together. There are those who are working to help us, in ways that we can’t always help ourselves. Perhaps that in itself can be a catalyst for hope.