Hi Cort,

Quote Originally Posted by Cort View Post

Thanks Maarten (I think I'm getting your name down :)). Their assistance, if it can be gotten, would be invaluable. Getting technical assistance on this project from people within the community and contacts outside the community, is, of course, one of the big reasons for posting the project here. It's a big, big project but if done right I think it could illuminate ME/CFS tremendously for everyone.

Just imagine a database that grows and grows over time. After a couple of years you'd have 1,000's of patients in there - you'd really know what this community looks like; how ill it is, what types of patients progress, who stays stubbornly ill, what kind of treatments work, what kind of tests really matter to the patient (eg is it really important to raise cortisol levels or not?).

Creating good strong databases and data mining them has become a key part of medicine and research. That's why the CAA is creating their biobank and database. If you have the right kind of data in there you can pull out gems. If we could create a good enough database researchers would want to search it. We would never have the rigor of a scientific study but neither does PatientsLikeMe - instead we have much more real-time data - data that can be used to examine treatment outcomes, treatment efficacy and characterize the CFS community in a way that's never even been contemplated before. The idea gets me going! :)

Quite so Cort, though I hope that " After a couple of years" - as you wrote - we also have some more knowledge from real biomedical research outside these forums but then I trust there will be.

As to "the rigor of a scientific study":

Well... being a philosopher of science who did a lot of methodology: I observe that (i) this forum will yield better data than normal medical questionnaires and (ii) probably also more, easier and faster and and (iii) as 't were for the asking, pronto answered also, on statistically useful levels for reasonably fair conclusions and (iv) "the rigor of a scientific study" depends mostly on the data and the statistical software + savvy to use them well.

So I'd say it's an interesting project statistically, as new research-methodology (Live Bio-Medical Research With An Active Patients Group), as new applications of software and in quite a few other respects.

Finally as to software: I EM'd you about the Proposal as regards software: What I have in mind in that EM, certainly on an extended time-basis, may be very helpful too, for quite a few reasons.

Anyway... this all sounds very good indeed, also scientifically speaking, as research, and I'll EM the academic pros I have in mind. They'll certainly be interested - what they can do (being both full time employed at universities) I don't know, but I am hopeful.

Best wishes,

Maarten (pretty PEM'd or I'd 've written more)