Why not do our own research, collect data, analyze it and find our own trends about best treatments.
I've setup a "Cluster Headache - Patient Driven Research" group on Facebook and I've build an simple app to keep track of any attack and any treatment we do.
It doesn't matter if you use medicines, vitamins, Oxygen or Magic Mushrooms. https://www.facebook.com/groups/471529509915015/
My idea is this:
If 2 Patients with data about their disease progression would share this with each other, together they would know more.
If a 100.000 patients have their data and share it together, they could change Healthcare.
I've set this up as Cluster Headache Patient hoping we can setup our own initiative to find proof of best treatments, support others and ourselves in a more active way.
Feel free to read also the website nobism.com to get more information on how we want to start.