I have so much to say I don't know where to start here.
First Ken, remember GAAP, in a strangely odd way the accounting principles can be applied to ms. It is a science of tracking and reporting and just like any other science there is a methodology behind it. I have a background with accounting and I can understand your points. Especially where people expect you to know "ALL" about income tax during the season. haha
I think the fact that your input into a project would be appreciated rather than thinking people would expect you to lead it. You can breath now.
We all have a specialization in life, working or not. Some are good with words, some with numbers and Jane Doe a housekeeper may be the best organizer in the world. All of our minds are gathered here.
Cheerleader, you are right this is a place where we can play guinea pig together and it is a blessing to have. It is a primitive and unorganized resource, especially when you don't know where to start. The search function is great, but is there a better way?
Cojack....yes the key term is data. There are many ways to organize any type of data ranging from your grocery list to sleep patterns etc.
My point on this is to have a database showing an anonymous individual....let's say:
#42, gender, lesions, active/nonactive lifestyle, ms in family, other previous illnesses, financial burden high or low, personality type....etc.
There are several items to include, but I have seen nothing along this avenue so far. There are databases for dating, dna markers etc. Why not ms'ers? The only problem I can see is confidentiality, how would this be protected?
Again, as Cheer said, we are doing this in a way here and now. The problem is I would feel uncomfortable asking some of the questions that anonymous data could include. So that tells me, the social aspect is of more importance. I see friendships develop, so who wants to discuss such private matters even when hidden behind a false name. The name is false but the feelings and people are real.
Patientx.....the infamous "I know an ms'er" syndrome. YES I heard all about that person who is doing FINE, who is she anyway? It is like nails down a chalkboard, but it is the other person's way of saying...I want you to be okay too. When I hear this, I always say.....but that person is not me and it halts further mention of "the fine one".
I will check the link you sent shortly.
And Harryz.....money money hunny. Even if Trump had ms would there be enough money to do a real study? Probably not. Everyone wants to be paid. With labs, chemicals, rats, heating bills.....who can afford to do things for free? I can, I can provide what I know about myself or pay a small fee to someone willing to provide what I am looking for. Here again, the monetary intention of a person holding that type of data should be evaluated. What I am looking for may never come about.
Ideas for reorganizing this site would be very helpful, especially for newcomers whose heads are spinning. I am thankful to be here and to have an opportunity to listen.