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…
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.
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.
The biggest issues here aren’t a lack of funding for the Foundation or effort by anyone but rather a drug company with a history of producing harmful drugs for the sake of money.
Merck has a history of interfering with medical researchers as seen in their Vioxx court case. It’s understandable that we are concerned about the outcome of the Baylor study and it’s healthy to voice these concerns rather than let them dwell inside our minds. Perhaps our voices don’t always meet with approval but in the end we are joined together because of PFS and it’s not something any of us care to celebrate. Life never prepared us for PFS but we do the best we can.
Nobody is blaming the foundation, besides it is the only thing that we have.
But we should be aware of unethical and unscrupulous Drs that rather than help harm patients live.
It is criminal to charge to someone for something that you know you can’t fix or ameliorate, taking advantage and sending unnecessary test.
Fucking tired of those kind of people, no difference with those that supported the he fucking pill inside Merk
This is not and never should be a 20 year study.
The first part ( no Genes study involved) =6 years and no even published yet.
Second part (genetic study no even started) = # years unknown.
If he is not committed to finish the study withing 6 months ( completed both part ) he should pass whatever data he have in possession and give it to the Italian professor, or other committed to finish this study in the most efficient matter.
You’re unlikely to get any diagnosis at all while the disease is largely uncategorised. Anyone looking to read about these Baylor results should try and get involved with the scientific effort.
Maybe I’m obsessing a little with the Baylor study, but the truth is in previous studies we were told that significant results were found even before the study was published (we weren’t specified what, but at least we knew they found something).
This one below makes reference to one of the studies in Italy, if I’m not mistaken:
Maybe American Universities are more secretive when it comes to disclosing some information about the results.
Whatever the reason for the time taken or for the lack of information, I think we all need to be preparing for next steps based on the worst possible scenario.
Just in case, if you haven’t done it yet, FILL THE SURVEY, it will only take 15-20 minutes of your life.
Maybe we will need to use more our force as a community in the future, maybe we should stay more connected to the pfs foundation. If there’s one thing we would pay/fight/work for is to find a solution to PFS, so many of us are basically willing to do all in our hands to help. We need to be more aware of this in the future, and use this force working as a true community.
I think, as you say, we will do better if we all band together and the first step is to stop trying to find a cure on the shelves of health food shops for an hour and to fill out the survey.
Let’s stay positive towards the study. I hope they will find good answers, insights and we may be able to create a possible treatment options from that point. Only thing concerns me is why they didn’t publish it yet? It seems like they work on slow-motion
Well, for one it took about two years to get enough people to participate. That’s on us. People are always quick to jump on the next supplement bandwagon, but are more hesitant to support actual research as it does not promise a quick fix.
Nevertheless, nobody is happy with this taking so long.
To be fair I was unaware about the study needing participants, I’m not sure if I was taking a break or something from the forum at the time but I only live 2 1/2 hours from where the study was taking place and I would have participated if I knew it was going on. I think in the future the website should send out emails or other ways of contacting people about things like this
Good idea. There really isn’t much point in speculating and ranting atm, things are the way they are, unfortunately. I will reopen this topic once Baylor publishes something.
