Lena and I thought it would be a good idea to share this conversation:
Lena:
I do have some question about how the data is being used. Since it's self-reporting, based often on admittedly hazy estimates, what is its scientific value? Are there standards for reporting info such as "Years addicted"? I wondered about this one when I saw it because I'm not at all certain how to answer that for myself. I drank heavily for years but it was only a couple of years ago that it was apparent to me that drinking was no longer a choice. So how do I calculate "years addicted"? Also, what about the 11 weeks I took off due to illness? I show my weeks with that time deducted, while WTE took off about 3 weeks and she still counts the time. People are all over the board in the way we count units; some say a bottle of wine is 6 (Brit) while others (including me) call it 5. I think graphs are just swell but should we be clear about what we say the graphs are saying? I think I'll forward this to loop as well because I've been meaning to ask him all this.
Me:
You're absolutely right. I don't think anybody is under the delusion that what we're trying to do here could be labeled as scientific. If someone is, or worse, wants to proffer our "data" as some type of evidence to someone else then they should be instructed otherwise. This is another good reason to keep it private. But it is neat, and it is as close as we can come and we can continually strive to improve our methods. But we have to face the facts, as a community experimenting and observing itself we are at a huge disadvantage...what about the placebo effect? No it's not even remotely scientific.
In spite of all this, I think that
maybe when we gather enough collective experiences together and are able to look at a whole body of data we might be able to find out something. -E
But to address a couple of your questions specifically...
1: Hazy self reporting. all studies done on targeted use of naltrexone were outpatient and included hazy self reporting, no?
2: We have no standards for reporting things like years addicted or even whether or not you're cured (unless you use Eskapa's definition from the book)
3: Weeks off. The spreadsheet has a cell where you report DDWON (Days Drinking Without Naltrexone) and it actually calculates your "Days in Treatment" by subtracting this value. However, the data is there and you can add this time back in and compare and contrast if you like. Who knows,
when in your treatment you took time off may even be a variable, we don't know. But by recording these effects and compiling them we will at least have something to look at.
4: Units. Units and conversion of units are based on international standards (and exact quantities of ethanol) and there are converters built into the spreadsheet for people to use. It should be perfect but it's not, we're humans and I'm sure somebody will get it wrong. To that I'll say two things. Absolute amounts are far less important to our purpose than the relative increase or decrease in consumption of an individual, if someone is consistently mis-converting it shouldn't really matter. And second, again, there were probably some errors made by the self reporting patients in studies done to date as well.
This board serves at least two purposes, we give each other support and advice, based on our experiences. This project
may go a long way towards serving both of those purposes. That being said...FILL OUT THE DAMN SPREADSHEET LENA!
-E
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