Baylor study delayed again

pvdl · July 21, 2019, 9:57am

Its absurd. The good doctor apparently only completed 50% after 6 years. Lets hear the excuses why this is “normal” and that the foundation can be happy that someone is taking up this work.

This is why foundations are typically the least efficient part of our economy (only topped by government institutions). They give away money with little to no strings attached. In business you have a high pressure environment and a clear goal: generate a profit. It sometimes goes astray but at least stuff gets done! And I am not even saying that there is an easy solution: Its in the nature of most foundations that they are slow inefficient etc.

In our case we have to continue donating, since there is no alternative. But as awor already hinted at in a recent post, there has got to be a better way to allocate funds, than to give it to doctors with no strings attached who then drag their feet for 6+ years.

lakehouse · July 21, 2019, 1:43am

i dont think this is correct.

it was alluded by some posts in the past that baylor already came across genetic findings.

@axolotl can you clear this up for us?

which part of the baylor study tells us which genes were methylated? the first part or the 2nd?

and the 2nd part is just starting now?

holyhead · July 21, 2019, 1:47am

U may be right,

MOONCHILD · July 21, 2019, 2:04am

It is not a conspiracy theory, it is what really is happening 6 years of a study that dosen’t involved genetic or large number of patients ?
The guy from Italy finished in a lot lest time 2 studies completed and published.
I really expect 12 years for Baylor complete the genetic study, period.

For sure this doctor from Baylor dosen’t have PFS neither a family member .

pvdl · July 21, 2019, 2:11am

At the end of the day who cares: Do you know how much money is needed for a cure of a complex disease like PFS? Billions. And it takes an average of 12-15 years from invention to market. So lets say 5 years until we understand disease, 5 years until we find an appropriate solution and another 12-15 years until solution gets approved. In total 25 years. Since it will cost billions said solution better be relevant for a more important disease. So basically a cure wont happen anyway in any timeframe thats relevant.

lakehouse · July 21, 2019, 2:17am

lets just agree to disagree brother

you have a colorful imagination

and i dont agree with any of it. no offense

MOONCHILD · July 21, 2019, 5:53am

Bro I understand you, it is hard to imagine that the study will going to take forever, I know that my opinion is not optimistic at all, and it is not a good news for optimistic people, it is sad but is true.
I think that people should not deposit their hope in a study that nobody knows how long are going to take, and if they are going to find something conclusive,
Without mentioning that the study are not going to lead to a functional treatment or much less to a cure.
I think that everyone here should to stop to be a seating duck and try to find the way to get better by their own.

frenchfries · July 21, 2019, 6:30am

More to come from Melcangi this year…
At least to understand the way things work.

axolotl · July 21, 2019, 7:43am

Ah this again.

Hey @lakehouse

I gave our opinion on what we expect to see here:

I can’t add more than that at this time. We don’t agree with @moonchild and @pvdl’s posts, and things being said are for certain incorrect (not limited to @pvdl’s endless homage to Ayn Rand at any opportunity). The researchers involved will not tell you patients anything relevant before publication as this could jeopardise it. The guesswork of people who do not have a conceptual framework for what is being undertaken or why is not useful. It is not worth running down several rabbit holes every time this comes up based on “apparently…” and whatever a user guesses the likelihood of a practicality from the result is. @Awor closed the other thread as it muddies the water; all these opinions are given with such enthusiasm it is clearly muddling patients ideas of what is going on. We’re just going to have to wait. In the meantime, this study doesn’t exist in a vacuum, and endocrine science is moving quickly. We are working to get things ready for next steps.

We do have a vague idea of the stage we’re at and it’s worth keeping in mind there are processes beyond just finishing the paper that can hold publications up. I know it is annoying but frankly this wasn’t community funded and we are extremely lucky to have those with the foresight to get it underway.

Try and be patient and just don’t keep paying heed to every murmuring. You’ll all have ample time to post about it when it comes out. From your apartments on Kepler-22b

vkg1 · July 21, 2019, 7:48am

People have been trying the same magical herbs etc here over and over for 10+ years. It’s time we all contributed money and got a decent study done. We’re not going to solve something like PFS on our own, obviously. There will be plenty of opportunity to play around with home remedies after we obtain st least a little bit of a sense of what the hell is going on.

Greek · July 21, 2019, 3:10pm

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.

MOONCHILD · July 21, 2019, 4:47pm

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 )

Frustrated · July 21, 2019, 5:02pm

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.

Jaime · July 21, 2019, 5:16pm

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.

ginge1612 · July 22, 2019, 1:51am

Is Baylor a study all you guys funded out your own pocket, and has it been published yet?

pvdl · July 22, 2019, 1:51am

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.

Frustrated · July 21, 2019, 9:26pm

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.

frenchfries · July 21, 2019, 9:53pm

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…

vkg1 · July 22, 2019, 8:36am

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.

MOONCHILD · July 23, 2019, 1:21am

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.