Since becoming aware scientific progress depends on funding opportunities from the National Institutes of Health (NIH) http://www.nih.gov/ and that Scientists have to go where the money is; they have no other choice. NIH pays attention to large scale problems that cost a lot, tending to ignore (with some exceptions) the rare problems. What most people in the NIH and elsewhere don't know is that Central Pain Syndrome, CPS is not as rare as researchers once thought. Some writers claim that it is as common as Parkinson's disease. If this is the case, it should be possible to get NIH's attention, but epidemilogical studies of CPS are lacking and we need them to build a sound case for research priorities. The various NIH Instututes do listen to patient advocacy groups. In fact, when they hold fact finding meetings on a topic, they almost always have one or two articulate people who are living with the condition in question as part of the panel. The fibromyalgia patient advocacy groups have been and continue to be assertive, and this has influenced funding opportunities for scientists. The target Institute for CPS is the National Institute of Neurological Disorders and Stroke (NINDS) http://www.ninds.nih.gov/.
As a patient coping with the constant pain of CPS secondary to a thalamic CM bleed & surgery, I intend on writing NINDS, encouraging more research & new treatment modalities and hope other patients diagnosed with CPS will too.
For info on CPS, please visit: http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
Happy writing! :)