Rich, I think this is a great and sorely needed idea - especially after seeing how people keep introducung threads to the effect "Has anyone seen anyone with xxx recover?" and then seeing how the thread scrolls away into oblivion.
A few comments though...I think - it's maybe just me, because no one selse has commented thusly - but aren't some of your questions rather personal and not pertinent? What difference does level of ediucation and financial status have to any disease? Well, I guess you have more options with money, but let's put it this way -- I never respond to any questionaire which asks these types of questions as I consider that sort of thing no one else's business and I was in fact raised by my parents to strictly leave forms that ask those types of questions alone. You may not get as much participation as you'd like if you ask these types of questions, for there will be at least some people who will just stop righ there and not read further.
Another point is that in this economy don't you think it is more informative to make your question regarding work say "able to work full time; able to work part time; unable to work" or something like that?
I didn't look carefully at all your tests so forgive me if I missed it, but some doctors who treat CFS patients claim that the ESR test is important in diagnosis. Did you include that one?
I think maybe for what you are trying to do you probably have to limit this to CFS/ME, but I should point out that that will limit participation from people who genetically are vulnerable to this disease and have avoided it from being able to participate for whatever light they (such as me) could shed. It will also limit people like Freddd from participating, who also beat serious issues in this cycle. (He beat them entirely, I have only just managed to stay afloat myself). I believe CFS runs in my family but everyone with this problem was diagnosed with diabetes and their doctors blamed every last thing on that.
Do you have a screen for entering genetics?
Do you have a screen for analyzing diet and lifestle issues? In particular, if I personally were to use such a database, I would want to see not only the supplementation regime of anyone whom I was considering following, but also something about their diet -- foods they commonly eat that they feel are important (such as sulfur containing foods, foods containing probiotics like yogurt, foods that some have ascribed particular value to like apple cider vinegar (acetic acid turns into hormones and is the poor man's treatment for high blood pressure), kombucha, perhaps others), what level of junk food they consume, what level of salt, how many servings of fruits and vegetables they eat everyday, whether they eat only organic, what level of chemicals - either from junk foods and pre-preprepaired foods or from environmental toxins - like use of air fresheners, perfumes, fabric softeners, lawn chemicals, pesticides, insecticides, cleaning products, etc. To include a complete list of foods and supplements taken on a typical week day and a typical weekend day. I think many of these things can have almost as great an impact as a supplementation regime.
Great project! I can see it will be of tremendous benefit. I hope it is progressing well.
Regards,
Rydra Wong
