how so? forum members submit info voluntarily and anonymously
natural experiments of your kind i.e. spontaneous resolution with some unexpected agent or lifestyle change - and other best practices based on n,000's of years living with a condition - there has to be value there for drug developers and clinicians. The work is authenticating claims and maybe matching people to scientists?
There really should be an aggregator for medical knowledge found on disease forums and posts of this kind (is there one?)