The Dusty Dog

Pain and Fatigue

One day, a couple of weeks ago, I was sitting in the waiting room at my rheumatologist's office, waiting to be seen. It's a busy office, but unlike an orthopod's office, one can be seen relatively quickly. Orthopods are the worst of the worst, and it's not uncommon to wait an hour or more to be seen, and you're usually in pain, and dragging around a cast, and just plain hating it. But, I digress, as I have no real intention about whining to my readers. I am writing about what happened while waiting for my rheumatologist.

I was sitting there, flipping though a magazine, when a woman, apparently trolling for participants, approached me to ask if I was interested in volunteering in a research study. I have this kind of weakness, wherein I get hooked rather easily. I asked her what it was about, and she said it was a study of pain and fatigue being undertaken at Stony Brook University. I said that as long as it does not involve pain or invasive procedures, I may be interested. I was soundly hooked.

I gave her my name and phone number, and agreed to meet at the university for a briefing, and of course, participate should I accept all terms. At this point, I couldn't imagine not accepting the terms. The initial meeting went well, I signed various forms for consent and whatever, and went home with my participant manual and a Palm Zire 31 that was modified to be used for prompting me for input and recording my answers. This is what I am doing for about four weeks, and I find the whole business fascinating. But, I'm kind of a geek, like that.


But, I'm never one to leave well enough alone. Not my style. So, I got on the internet and started researching about clinical trials, the National Institute of Health, and/or whatever or whereever my surfing took me. One of my google search terms was "CORIHS". This took me to the Stony Brook Office of the Vice President for Research, which as it turns out means the Committees on Research Involving Human Subjects. Interesting, in that here was a bunch of links to ethics guidelines and the entire handbook for CORIHS Policies and Procedures. Way too boring to read it all, but interesting nonetheless.

Then, I took off to the National Institute of Health (NIH) website. From there I linked to the Office of Human Subjects Research website. From Regulations and Ethical Guidelines, I found the Nuremburg Code. Very heavy stuff. No question, the study I'm involved in is so benign in its participation requirements, but I was truly struck by this find. Saddened also, as we all know what precipitated the Nuremburg Code.

Basically now, my "research" is pretty much over. I didn't find anything about a pain and fatigue study, which is good, because one thing the researchers were fairly clear about is not divulging too much information to participants for fear that too much information could skew the results. I suppose if I did find something relevant, I'd have to report it to the researchers, and possibly be dropped from the study, but I just couldn't help myself. I'm a geek. I have an inquiring mind. I also have a HUGE altruistic streak.

Medical studies are not always pleasant. At the least, I think they can be rather annoying. This study is a little bit of a nuisance, but certainly not an overwhelming bother. I can handle it just fine. And, the info garnered from this pain and fatigue study will likely not directly benefit me. But, I hope that I do benefit someone someday. I hope that my carefully inputted responses to the beeping prompts throughout the day give the researchers and doctors better information on how to objectively measure something so subjective as pain. I'm not really sure what the fatigue part is about, although I'm sure it's much more easily and objectively measured. Hmmmmmmm......... maybe that's one link.

Some day, I'll get the opportunity to read the results and final report. I look forward to that.

posted by Dusty Dog at 1/15/2006