I began writing some thirteen years ago after I was inspired by The Human Ecologist‘s request for readers’ thoughts on science as an opposing force to the patient experience. While I certainly feel the tension between the two, I do not want to ever think of them as being foes and I wrote a response to that effect. After my last post reviewing a review article, I realized it was time to revisit the issue. For those of us with a debilitating chronic illness, especially those of an invisible nature marginalized by mainstream medical and legal systems, the scientific method and publishing process can be painfully frustrating to observe. We, the patients, need the understanding and acknowledgment that can only be achieved after the scientific community reaches some sort of consensus on etiology, diagnosis, and treatment. Our dependence on that process gives us an emotional stake that is hard to put into words, though you can see evidence of it whenever we attempt to communicate.
Online support groups and chat rooms provide a pathway for patients to help each other with surviving and healing tips, but they can also provide a grassroots movement towards advocacy, an act that is challenging for those of us who have physical limitations. Together our voices can be louder, maybe even loud enough for industry to hear us. We can achieve some change if we keep at it. But we cannot force the medical community and legal systems to acknowledge our situations and help us until there is a better understanding of the situation. To that end, our voices and our individual stories sometimes feel irrelevant. Those of us who have lived with MCS for a while and been in contact with many others can witness to the incredible diversity within this illness. There are so many ways to develop this condition, so many ways that it manifests itself, and so many treatment options. While the broad strokes of our narratives have a common thread, the details may be contradictory. It makes for a very difficult problem to solve, especially if the solution is to include etiology, diagnosis, treatment, and eventually legal acknowledgment and accommodation. An individual story becomes one data point, and not even a quantifiable one until specific testing under certain conditions is done.
Every step in the scientific method of observe, question, hypothesize, reproducible experiment, analyze, conclude, refine and repeat the whole process, and then finally publish in a peer reviewed journal (that last bit does not apply to school science fairs) is absolutely neccasarry. Scientists love to disprove each other and we need them to do just that because it eliminates unintentional bias and mistakes. With each iteration of analysis/publication/retry/rebut we get closer to the truth, or at least our best understanding of of how nature works. However, that means the process can be a lengthy and contradictory process, combative even. Our anecdotal patient truths are not irrelevant, as my last post shows with the case study, but they don’t help the scientific method along in the substantial way that surveys, experiments, trials of large groups and control groups do.
For example, having lived through certain health problems and discussing them with others in simillar circumstances, I know what to expect from a study on TILT involving NCGS, but I don’t want the researchers performing that trial to have expectations either way. I would also want the experiment repeated multiple times by different researchers who are picking it apart looking for mistakes, biases, and inaccuracies. Even more than the researchers, I need those results to be as close to revealing the truth as possible, even if that means that my expectations were wrong.
So, I struggle to not get angry when I see an article with a conclusion that contradicts my own experience. I struggle to not take it personally when old friends dismiss health issues that are not theoretical for me, but in fact painful and debilitating for my daughter and I. But mainly I am frustrated that there is not more research going on. I would rather there be lots of investigative work, knowing that some of it would be off track and dead ends. At least there would be progress. Put me in a trial, survey me, or do a case study on my daughter, 3rd generation in a family with worsening intolerance issues. I am not naive, I know the forces that oppose such scientific focus are large; the chemical and pharmaceutical industry not to mention the invisible nature of this illness are major obstacles. I suppose that brings me back to loud voices. The scientific method starts with observation and questions so we need to keep forcing others to observe and question us. There aren’t many researchers living in my small home town, but I think I’ll wear my mask tomorrow, even if I don’t need it, and force someone to observe me!