Hopefully not in my grave! I’m not a big guy but I do like my personal space.
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I think you are making more of the stigmatization potential than you should. Even if it might cause some stigmatization I’m sure people would rather be stigmatized but cured than not stigmatized but slowly dying while missing out on everything they wanted in life. I see what you are talking about, though, that’s why I suggested another score for other forms of contribution. It’s not as if this is a novel idea. Reddit, Slashdot, and many other major community sites have largely owed their success to karma systems.
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Well, perhaps we’ll have a conversation about this later on, right now, the admins of the forum are too busy to add some sort of donation counter to the forum anyway so it’s somewhat moot today.
If anyone here is a talented programmer, do let us know, it would make feature development more of a possibility.
I really appreciate the new web site and survey push. It really saddens me to see how thankless all the work you do really is.
I think it is quite thankless, yes. Some people are outright rude.
Hopefully more people will want to do more to help very soon.
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Precisely. And I think a donation counter is not effective. We need a badge system for donators, that applies once the user has set up a monthly donation of 10 dollars as an example.
I also share the frustration that the good dr. from baylor is taking 6 years to complete a study, and I believe it shows that something is not quite right in the university research/ medical research field, however I would not let that discourage me from donating.
Social norms and social enforcement are extremely powerful psychological tools to affect behavior. I agree that a badge system will be extremely effective in increasing donations. We can have a 4 tier badge system for the following amount of monthly donations - silver ($5), gold ($10), platinum ($25), and diamond ($50). I have no idea how complicated this would be to set up though.
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I thought people had already donated a lot of money, and the Foundation had spent it on a couple of studies which have so far yielded little, in fact one which almost said it was psychosomatic?
Seems to be quite a lot of people also getting better or recovering while adhering to the cdnuts style protocols.
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Who? Name them.
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I think the guys threatening not to donate in these posts, are just using the foundation as a scape goat.
You guys never planned on donating, and wanted to continue with experimenting home brew.
Just say that and move on instead of pointing fingers indirectly at awor. If it wasn’t for him you guys would be desperately trying to “aCtIvAtE tHe 5aR” or some other stupid theory that ignores a whole decade of progress
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I went to see Khera at Baylor, he charge me $250 just to see his face, few days before the appointment I sent him a email asking about PFS, he knew what my visit was about before hand, he replied me “Let’s discuss it in the appointment”.
I waste my money and my time.
Now whoever want to send a donation, can send a check directly to Khera at the end of the day he is the head of the study and he is going to receive that check with a big smile.
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So donating to the foundation = donating to Khera even though alternative solutions were proposed?
Honestly, I’m tired of seeing your subliminal messages attacking awor and the foundation.
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Pls refer to my cdnuts is a fraud thread regarding that topic.
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I don’t support home brew at all, as I’ve stated many times in other threads. Also, I don’t blame the foundation, I think it’s the governments and the whole medical community to blame.
The problem is, I’ve already spent 11 years in this miserable state, seen countless doctors and tried all kinds of therapies, and I ran out of hope a long time ago.
I need renewed hope, which the research failed to deliver so far.
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I am not attacking anybody, I am just speaking the true, I am speaking what I believe to deserve to be told.
I didn’t mention the foundation, and I didn’t mention awor, I don’t know what you are talking about.
Donations will not work like that, it took an eternity to get the survey done for only 100 of us, make with your own conclusions.
If you want to shut my mouth or be silenced, it will not going to happen.
You don’t like me and I don’t like you neither, we better stop interchanging words, just ignore me, I will do the same with your post.
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You literally said donate to dr khera instead of the foundation
As if the avenues we are taking right now, have anything to do with a slow institutional process that we tried in the past.
You are taking subliminal attacks
Not, we are talking about donations not institutions, I just want to let the people know to the hand of what type of people the money goes.
I am not attacking the foundation definitely no.
The slow of the research and the slow of the survey it is out of the control of the foundation, everybody knows that.
And stop to pretend to be the knight of the foundation or a Hero because you are none.
I am 100% With You.
Yeah but if we don’t commit to research, what’s our alternative? If you’ve got a better alternative you’re more than free to share, but wouldn’t it be more prudent to put our money on research with the possibility of results rather than… just do absolutely nothing?
Maybe there’s a better way to go about research than the way that’s it’s being done currently, but for now, this is what we have and this is what we’ve gotta work with.
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Like honestly guys, the big problem with PFS is that we literally don’t know what it is. We don’t know what exactly is wrong with our bodies, and trying to experiment with therapies at the moment is similar to doing surgery on a patient with no lights on and a garage toolbox instead of surgical instruments. It might work out, with divine intervention, or luck, or whatever you choose to believe in. But it can also break you depending on your state.
There are so many phenotypic variations (basically how the genetic/epigenetic situation exhibits itself in us) with PFS and it could get really bad.
That being said I do understand the frustration with having to wait, but maybe that’ll be easier if we commit towards coming up with a solution.
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