Burning the candle at both ends does catch up with you eventually. And, so it went for the Unknown Patient on Saturday morning Our Unknown friend had agreed to attend a support group leaders' meeting called by the IMF. For some Unknown reason, although he had asked for a wakeup call at 6:30am, a somnolent Unknown Patient was awakened at 8:30am by a call from folks at that meeting wondering why he hadn't yet showed up. It is still Unknown whether he slept through the wakeup call or if it was just another casualty of the Unknown Patient's inability to speak a word of Spanish.
After scrambling into the shower and hustling over to the meeting as fast as he could without risking a skeletal event, the Unknown Patient walked in, poured some Unknown tepid liquid purported to be coffee into a cup, and sat down.
There was a rather spirited discussion going on about the complexities of conducting clinical trials in Europe. The group included a diverse mix of both patients, family members and doctors from nine countries(i.e., UK, Germany, Belgium, Poland, Spain, Austria, Netherlands, Sweden and the US.) Everyone was quite anxious to share what they've learned and hear about how other people have confronted problems that they face. The Unknown Patient was glad he had found the coffee because he needed to be wide awake to keep up with the other folks at that meeting. Beyond clinical trials, they exchanged ideas about running local support groups, making trials patient-friendly and accessible, patient support needs and advocacy best practices. The group(see below) was energized and we all left with homework and lots to think about.
Please note that the Unknown Patient is a patient, not a doctor and not a scientist. This summary represents a layman's view of what was said at the conference and should form a basis for raising awareness of issues that could be discussed with a qualified professional. In no way should anything contained in this report be taken as medical advice or form the basis for action without first consulting a qualified medical professional who is familiar with your specific medical situation.