nobism is an initiative setup by Rogier Koning, a Dutch cluster headache patient, to support Patients, Patient-Leaders and Advocates. Goal is to get active, collect data and work together to find solutions by research.
My attacks started around 2007 and developed into chronic attacks very fast. Not 100% all year, I had a break from September to November-December with less attacks. Rest of the year was up and down from a few up to 8-9 attacks a day.
I’ve tried a lot of treatments, just like many of you reading this. I’ve tried medical treatments like oxygen, Sumatriptan. Also other things I could find to feel better like: Botox, Massages, Accupuncture, Drinking water every half hours, alternatives like MM, Cold, Heat, Breathing techniques and many more.
I always tried to change 1 thing at a time, so first stop and then start other.
To know something was effective or not, I looked at the amount of attacks I had. This means if a new treatment didn’t gave me less attacks, I would stop and try another. Its hard to find out something with Cluster Headaches, because they come and go. You never know if its the treatment causing the improvement or if its just your normal change of clusters.
This all brought me to the idea that if I would have data about my attacks and treatments, I could find out if attacks were getting less while changing treatments. Being able to compare these results with others and their data, could prove if it was a coincidence or a result of the treatment.
Thats when nobism started.
The goal of nobism is to setup our own patient driven research and help our advocates with the outcome to change our future. We as patients can collect unique, detailed data about the effectiveness of our treatments. We also have all the options available to understand the data we collect.
At this moment we have collected already a lot of data and every month we add a few thousend datapoints. Every month a “personal report” is made, for all those that shared data. We also try to include some output about group statistics. We are building this and every now and then the report will get an update to give more insight.
We also use the data to advocate. We don’t share data we but we announce we have it, to try and find research groups willing to help us with our research or interested in using the data to speed up theirs.
If a project is found, those collecting data can decide for themselves to share the data or not.