Agreed. I’m waiting for Awor to give his approval to the next project and then I’ll release the money I would have spent on magic beans.
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In the human history there is a whole history of money contributions to cure diseases and the only outcome of those contributions are and always been (More money to the pocket of those that collect those contributions with the promise that they will find the cure, at the end of the day those cure never come, why because it is not convenient to find those cure. (Sad but true).
I believe that people that are suffering already suffered enough mentally, physically and I the last thing that they also should suffer is economically.
Lets agree to disagree that at least when we buy supplement regardless of if those supplements are effective or not, it going to our belly, and not to the pocket to a joker research doctor laughing to our back.
Belive or not I am here in this forum because, I suffered for many years like most people here, and I came here to support those of the most unfortunate PSF sufferers, and to share in give hope to many that are thinking in suicide, in my case I been on those shoes, but not I am feeling pretty normal, alive again, my last two weeks had been phenomenal, all side effect are gone in all the meanings, I believe that PSF is long lasting for one more than others, but are not permanents and I am a living example.
Thank you but NO, donation doesn’t go with me, they only one that have the obligation to donate in a research is the big pharma that created all this mess ( Merck )
I don’t really get why guys on here complain about the ongoing research or what the PFS Foundation is doing. There are people on here who are volunteering their time and resources to contributing to the common goals of the PFS community and people who just complain about it.
If you are unhappy with what’s going on, go take action yourself. You’re not entitled to the goodwill of the fellow PFS community but you benefit from it anyway. Complaining only detracts from the community and makes people want to contribute less.
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Lets agree to disagree that at least when we buy supplement regardless of if those supplements are effective or not, it going to our belly, and not to the pocket to a joker research doctor laughing to our back.
@MOONCHILD - I disagree to disagree with you. The researchers may not have cured us or found the exact cause, but they’ve elucidated important aspects of our disease that you can read up on. We aren’t just filling pockets of researchers or Foundation members as if the Foundation is some sort of corrupt non-profit.
I think if herbs or supplements were the cure, someone would have discovered the random cure by now at the Vitamin Shoppe. Science is our ally, the public’s ally, and to me the best chance of finding a cure or pathology mechanism of action. That science is funded either through us, or research grants scientists obtain from hearing about our condition like any other research project.
Is Baylor a study all you guys funded out your own pocket, and has it been published yet?
Exactly. However, even awor said that the current path the foundation is on might not lead to success, if they dont change tactics. So maybe there is some truth to it.
I have not seen AWOR complain about the Foundation on this forum and anybody is entitled to their own opinion. I don’t know what his opinion is of the research but he is doing his own study which is another way of contributing. If you don’t like the way one group is trying to solve the problem, don’t complain and bring down those are are contributing, do it yourself.
BTW, most of the guys on here that are complaining really have no idea what is actually going on. I get that it is frustrating to have to wait so long for answers and the results of studies but its the reality of how the process works, especially if its going to be done well in a credible way.
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Anything that is making us closer to anything scientifically tangible or palpable helps…
Baylor, Melcangi…
I know Melcangi’s path is being discussed a lot for investigating things which seem
« Off topic » ( I tend to think no but that is my European approach :)).
Let’s not waste precious time on fighting the wrong battles…
We may disagree over technical details, we may feel time is slow ( specifically when you are sick, I get that, I am right there)…
If we want to start fighting this, we need people who are qualified enough to dig what most of us can’t do: science ( well some are well read in that aspect from what I got and I respect that).
The more divided, the more time wasted in my opinion…
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Merck isn’t going to contribute money to research that gets them sued. It is up to us to contribute that money. That ought to be abundantly clear to everyone.
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Well …that should be our job and foundation job to make the responsible of all this mess to contribute and pay for it, it is very unfair to as for contribution to those that are affected in many way: Physical affected, mentally affected in top of that many of us loss our jobs of being mentally and physically disable, many are divorced or separated from their partner because all this disaster, other loss their live making suicides, most of us spend already thousand of dollars in doctors visit and lab test, and in top of that are you asking for contribution? I am feeling like you are joking with it.
The Baylor study cost $2000 for each participant, in my personal opinion it was abusive…you know what I don’t want even to talk more about it, because I probably are going to be ban for this forum forever…
let’s better to stop right here in this line.
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What you told me of Mohit drag my feet doesn’t bode well for confidence…He also has several bad reviews on google I noticed…Time well tell but they will be people who won’t be around then to hear the verdict…
It doesn’t matter what fair would be. What matters is what gets us better, and that’s science, which isn’t going to happen unless we make it happen.
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Thank you for participating in the study, that was not required of you. It will be published and I understand your frustration that it has taken so long but this sometimes happens with the scientific process. Social change doesn’t happen overnight but there is building momentum.
Yes it will be published everybody knows it, the problem that I see here is that there are not motivation and lack of real interest on finding out the cause of the problem or to solve the problem, I and what also see here is the money interest around the problem.
If you guys want to play to be blind you are welcome to the game…the Baylor study is pointless and mark my words…
In my modes opinion about this study you know what : I don’t really care…the only thing that bother me is to see many people here very affected by PFS with a tremendous hope in that study. I am going to bet my balls that this Baylor study are not going to take you anywhere from what you are.
I am felling better and better and the only reason that I am in this forum is because I want to see you guys to improve your condition, because I know how terrible PFS is, I am trying to give my contribution with advised of what I feel that maybe help me out, but is hard because everybody is different.
I think that the foundation and everyone of you as individual should put an effort to change the direction of how to address this situation, because time is clicking and you don’t want to end you lives been a seating duck waiting for a joker researcher find the scientific solution.
Yes the science is the way but when are involved peoples and doctors and researcher that really want to help without the interest of having a pile of money at front.
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Sorry, but its a fact that this study is still not published, 6 years after it officially was announced by the foundation, with rumors swirling around that only 50% has been completed and the uninteresting bit at that.
Should we praise the good doctor for taking the foundations money and then failing to complete the study within a normal timeframe?
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No one has to praise anything, but you would do better to have some patience rather than embracing rumours and guesswork that are clearly having a misleading influence. Your post shows this is the case. What precisely makes that “swirling” rumour appealing or credible to you? What did you find convincing about it?
What is a normal time frame in your experience for exactly what they are doing? I’ve pointed out it took melcangi 1/3rd of the elapsed time to publish a paper in a much smaller cohort looking at the status of 2 genes - about 20,000 less - in a simpler analysis.
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Let’s also not forget that it took almost two years of patient recruiting. That’s on us.
Melcangi has recruits readily available and it still took him two years to complete his study that is galaxies apart in scope from what Baylor tries to accomplish.
I know it is frustrating that it takes so long. Believe me, I was here in 2012 when Awor first published his roadmap of studies. I never expected that by 2019 we would be only about halfway through. But it is what it is. Nobody is really happy with that, but baseless rumors and insulting the lead scientists are not going to speed things up.
Awor has made it clear that ideally we would like to hire researchers commercially, where we call the shots and they answer to us. But as long as we lack the funds to do this, we are dependent on the goodwill of the scientists. It is worth to keep this in mind, when people insult the few scientists that are willing to work on this problem.
I know people need to vent sometimes, but it’s pointless to have the same discussions over and over again. It’s only generating unrest. Let’s keep this thread for actual news.
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How about getting the funds from here?
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It’s not enough. We would need more than ten times the prize fund.
There is a lack of coordination between members of this forum and the foundation. There are lots of opportunities to speed up recruitment but all of them start with integrating study recruitment tools into this forum.