To the speed that is moving maybe next year or so, probably Merck and news press are reviewing to approval the release, possible trying to negotiate to modify the data.
1 Like
someone said a couple months. look up some posts, cant remember when exactly, but recently.
1 Like
It’s in peer review so no set timeline, but usually it’s a 3-6 month process that started a month or so ago
1 Like
I think people with chronic diseases go through similar motions when major studies relating to their condition are close to being released. We went through something similar with the Havard study. Folk heading to Harvard to be part of the study were hoping to get some answers while they were there. Unfortunately, the outcome was not what we expected.
It’s important that as many people as possible take part in the survey. That maybe our best shot at getting a major study completed on our condition.
Still we had the prep medication surprise and some folk here are seriously looking into stem cells and other treatments so who knows what the future might bring. We are a curious bunch and some of us have the means and motivation to make things happen. People will continue to take Fin and new members will arrive with their own journeys that we may learn from. Let’s just not take any unnecessary risks in the meantime and stay safe.
8 Likes
Any updates on the study ?
I don’t know if I should feel optimistic about the Baylor study or if it would be better not to have high expectations to avoid more disappointments…
I think I’ll cross fingers and forget about it for a while
In my personal opinion, Baylor will have ZERO finding, believe me.
I have been there several times with the " lead doctor", the last time was less than a month. I know what I am talking about.
I got zero treatment advice.
I got more fucking hormone test that I need none one.
I just went there and been charged just to see his face, I won’t see him no more.
I don’t want to kill your hope on that study, but I just have none one.
4 Likes
Well, if as you say they find nothing, I hope they have a good reason for having needed 6 years to finish a study in which they end up finding nothing.
I was 23 when they launched that study, I will turn 30 in two months. It’s almost impossible to believe that they needed so much time.
The study will probably be published during the next weeks, so let’s hope you are wrong.
9 Likes
I heard someone mention Baylor found “significant findings” back when the study was launched I wonder if they have since retracted their claims?
1 Like
Think about it, 7000 genes, so far 35 participants, 6 years, and now is when they are analyzing the data, and comparing with the control.
1- What technology are they using?
80’s computers operating with DOS?
With today computers all those genes of the 35 people are analyzed in just one week, and I know what I am taking about.
6 years …this is embarrassing.
I feel pity for those that paid $2000 for participate, I am glad that I didn’t.
4 Likes
No offence man but why would they give you treatment advice based on the results of the study before it’s even been released?
1 Like
I’m hopelessly optimistic but I agree I really don’t think this study is going to provide anything of much value at least in terms of treatment. Best we have coming is Sage.
2 Likes
Because he knows for what purpose I made that appointment and when I email him before the appointment I ask him about possible treatment options and he replied me " lest discuss it when you come here the day of the appointment "
So if he don’t have any to discuss, he should be honest and say it, he made me to go there just to charge me and put money in his pocket.
With no offense, It is right for you?
1 Like
I don’t know but like others have said it makes little sense that they’d spend so many years on an inconclusive study. I agree with what you’re saying in the sense that we should all be cautious with what we expect, but please try not to be so negative man. Most of us use this forum for respite from the thoughts that go through our head on a daily basis and reading such negative comments only exacerbates our existing problems.
1 Like
All these Drs latch on to this like blood sucking leeches…I wished 200 bucks was all I was out on PFS…I have spent thousands…You actually had to pay to go particapate in the study??.Not to mention all the money the foundation give this guy to do the study?? 6 years later??? If I was them I would want a damn refund, all involved lol including the foundation…
I think it more likely at this point that someone invents a time machine and I could just go back to 2013 when life was good, and when this study started lol than someone actually inventing a treatment…
2 Likes
Fundation should pay for a non-ethical doctor from asia where the ruls are less tight in order to do as much trials as necessary. We do not want to wait for more inconclusive diagnoses.
2 Likes
Man what I would do to go back to 2013
4 Likes
It will be interesting to see if this study will be a nothingburger like the harvard study was. Lets hope not but be mentally prepared for the worst.
Two of the three members on the board of directors of the PFS Foundation wake up every morning missing their son who committed suicide because of PFS. Awor, who is a founding member of the Foundation, has been suffering from PFS for about a decade. The Foundation are volunteers who have contributed more to this scientific journey than the rest of the community (excluding people like Awor, Mew, Axolotl and maybe a few others) combined, both in terms of time and money. Of course, these people also have job, family and other life commitments. Don’t blame them for the slow progress, while 90% of the community here contribute little if anything to our cause. Some cannot even be bothered to participate in the survey which costs about an hour of their time.
If people want faster progress, they will have to commit more resources. But don’t blame others for the lack of progress.
14 Likes