There have been a few questions about timeline and a few other things that are good ideas, but apparently too difficult to fit into this poll.
Hi Julius,
Yes, I agree that some of the good ideas that have been suggested are too difficult to fit into this poll, even with Kims heroic efforts.
How about if we do this one as sort of a preliminary study....just get a feel for waht the commonalities are between XMRV+'s. Once we have the results for this one, we could use those in a second poll and dig deepr into things like disease progression etc.
When we started out, thats exactly what I wanted. I would have been happy with a short and simple survey, just get a feel for what the commonalities are between XMRV+'s.
But then Kim came up with a ready-made survey form, and people started making really good suggestions about what could be added, and Kim didnt mess around; she just did the work.
At first, I questioned whether we should be adding symptoms without discussing them first--especially since the survey was getting so long. Then I realized that people might have been scoffed at for years when they mentioned these symptoms to their doctors, and the symptoms might turn out to be important. So I did an about face, thinking that if someone has a lavender nose, and wants it on the symptom list, then lavender nose should go on the symptom list.
Then someone suggested that if we can manage to get a really good, comprehensive survey, it could be very helpful, not only to us, but to clinicians and researchers. Really? Would that be possible? Or am I delusional?
This idea--that it might be possible--was reinforced when someone else, cfs since 1998, offered to do the statistical work.
Now someone else on this forum has put me in touch with a person whose career has included reviewing studies for medical and educational journals, for relevance and accuracy in their statistical measuring. Im asking this person to take a look at what we have so far, and I hope we can be patient a little longer, and wait to see what advice this person gives us.
Meanwhile, where do we stop? I personally don't want to stop until I've had a chance to run it by three people I know who are between 0 and 10 on the Bell scale--people who don't usually post because they are too sick and exhausted--but who have very clear minds.
Again, Im hoping we can be patient a little longer. Weve all taken surveys we thought were not very good. It will be an amazing accomplishment if this ad hoc group can come up with something really good.
On the other hand, I do see your point. If I'm in the minority, I'll be happy with whatever survey I can get.