How does surveys completed equal research dollars? The original targets have already been exceeded, and if I am not mistaken, the secondary targets. But no research was initiated when those targets were hit. I don’t want to get into a debate here, because you put a great deal of personal effort into this forum, but the logic seems flawed to me.
1 Like
The logic of posting that you don’t want to get into it, but do want to call me out in a public place seems sketchy too.
The original targets are generated by the forum software. Nowhere did we say that X number of surveys = outcome Y.
Survey data is the proof we have this condition. Look at how many people say their doctor dismissed them and sent them home.
The likely outcome of everyone taking the survey and us being able to prove the condition irrefutably is qualification for rare disease funding, attracting the best scientists to work on what will be for them a new and exciting field. For us, it’s a chance to get our lives back. For me, it’s the chance to never have to write back to someone saying that filling out a survey is too much effort and they can’t understand why they’re being asked about it repeatedly.
2 Likes
Mohit Khera became financially involved with Merck following - or shall I say as a result of - being given a grant by the PFS Foundation, not before.
4 Likes
Quite frankly it is too much to scroll past you Greek. Being a moderator I think you should be responsible for sharing your thoughts on topics like these being as you are directly involved with organizations. The information you’re privileged to isn’t the same as everyone else’s so perhaps a little more transparency would help people to take part in the survey.
This seems quite reasonable to achieve to get everyone to complete the survey, why not freeze the accounts of members until they have the survey completed, I’ve been banned for less. This forum really is a powerful tool for the members and it is too bad the survey hasn’t led to any research announcements, I’m sure we all can agree. My suggestion would be to as well as posting “please fill out the survey” it would be great for an update on how the surveys are helping and what’s coming down the line.
It used to be, years ago when we all first got a glimpse of hope. Now the light that Baylor was, is nothing more than a burnt out waste of mercury and filament. Sorry but that is just my opinion. We’ve all been suffering waiting for it to come out and it just never does, it’s torture.
I’m tired of the Baylor study rumours.
1 Like
This is just like my mom always used to say… nothing good ever happens in a Baylor thread.
7 Likes
At this point, generating survey data is one of this website’s primary aims. If you can’t stand it, please go elsewhere.
nothing good ever happens in a Baylor thread.
Agreed. This is old ground, that’s been trodden repeatedly.
2 Likes