At this point, Merck’s patent on the drug has expired so I’m not sure how much they stand to lose realistically if it gets pulled from market.
I’m more upset because of the thousands who will want to seek conclusive proof of these persistent side effects before beginning treatment, and won’t find anything because the study isn’t out.
Those people will be as much victims of this than us.
Absolutely nobody should be hounding them to do anything. Members of the PFS community have been incessantly pestering with email after email for several years now and it’s made 0 difference to the timeframe. All you’re doing by hounding them is winding them up, it’ll be out when it’s out.
The reality is that the vast majority of members on this forum contributed nothing to this study and aren’t owed anything from anyone, constant badgering makes us look entitled.
Even worse is that it could dissuade other scientists from working with us in the future if we forge out a negative reputation for ourselves and word gets around. What scientist wants to be constantly harassed while they’re doing their work? Let’s not do that to ourselves.
Agreed
Hey @Crazycalypso,
Would you mind completing our survey? We’re approaching the deadline before the results are to be hopefully outsourced and published. This will be a major step in the progression of our cause and it’s a prospect we’re very excited about.
It’ll take an hour of your time and is one of the most effective ways you can contribute to the community. We’d all be very grateful!
Even worse is that it could dissuade other scientists from working with us in the future if we forge out a negative reputation for ourselves and word gets around. What scientist wants to be constantly harassed while they’re doing their work? Let’s not do that to ourselves.
This is a point that is all too often missed. I understand that this condition is acutely painful, and therefore frustration builds quickly, but the way elements of our community have attempted to engage with Dr Khera over the years is frankly embarrassing.
How can we expect any scientist, let alone those who are preeminent in their fields, to investigate our condition, if we behave like this?
Hey SkinDiesel, I don’t have a particularly bad case of PFS, and on top of that I have a history of anxiety, and catastrophizing things (something I appreciated greatly as I undertook CBT) which leads me to believe this is likely no exception.
On top of that my bloods are all quite good apart from cortisol (slightly elevated, but easily due to stress from this entire ordeal).
Because of all this, I’m afraid I don’t feel I’ll be much help when adding to, and potentially spoiling, the adverse reactions survey. My interest in the studies pertain to wanting to know whether or not I do have minor PFS or nocebo.
While I agree with this, there should be more transparency between researchers and the foundation, which can then be passed on to members of the forum. A bi-annual update would reduce the amount of unnecessary heckling from certain individuals here.
That’s not how scientific studies work.
They complete, peer review and publish.
They don’t reveal what they’ve found out half way.
Judging by the amount of rumours being spread, and supposed whistleblowers in the research team, it’s certainly possible this isnt happening this time around.
Something to set these rumours straight should be done, since it does nothing but cause unnecessary worry, which then leads to an even greater inflow of emails to these researchers.
Also, I fear most of you have missed the point of this thread. It wasn’t to go after Baylor but rather ask "why hasn’t anyone taken it upon themselves to test for androgen insensitivity or epigenetic changes?
Granted you would need connections to a research institute but are we really going to pretend that no one has at least some sort of connection they could exploit?
One can only rely on himself at the end of the day.
Can you prove that or back that up. Maybe if the emails and the hounding never happened we wouldn’t be as far as we our now or the Study would never come out or a lawsuit would have never been filed ??
I don’t think the emails made a difference either way. If anything it won’t force them to work harder, but write us down for mentally ill patients first and foremost.
Use common sense man. Barrages of emails from patients who have no power, influence or authority whatsoever aren’t going to frighten anyone into releasing anything.
As previously mentioned, pretty much nobody on this forum contributed anything to the study and nobody’s owed anything. What consequences could angry PFS patients inflict on Baylor because the study is taking longer than they’d like? None is the answer.
And worth mentioning that even if you had personally funded it wholly, without a demand that the results are published within a certain timeframe being in some sort of contract, you’d have no power there either.
My guess is that the community has for a long time focused on “someone should” not “I can” when it comes to progress.
If you look back to Awor’s posts over ten years ago, you can see him outlining what is still most likely the best course of investigation and a decade later the forum is still talking about treatments that have failed repeatedly.
To be fair a lot of people here are likely in a state where they physically can’t do anything, while another percentage are just raving hypochondriacs. Realistically a minority are able to go at it individually to find mechanisms of action, but still its surprising that no one has gone at it alone.
I have a few good contacts at several of the Colleges in the University of London, so I’ll go and see whether they will be able to test me for physiological/ epigenetic changes.
Speaking of Awor, where did he go? He, alongside several others- Jaime, Mew et al. seem to have become inactive. Have they gotten better or just want to put PH to one side?
Very little evidence of this.
Realistically, nobody here can do this. It’s not going to be on Google, reading random papers will not deliver the answer.
Realistically, people here should leave the science to the scientists in more than 99% of cases.
I don’t meant to shoot you down, but this is a complicated problem, the answer isn’t going to be stumbled upon. Part of the reason we are where we are after more than ten years of this forum, is people not being realistic about what is possible for people who aren’t working in scientific research. Most people here couldn’t fix a car, or write a computer programme, but we persist in the idea that we could solve something far more complicated with a smartphone and some imagination.
You may be better connected than most and maybe you are onto something, but at this point, there’s not much point in fielding responses from enthusiastic people who are just hoping you know the answer.
Our focus should be on satisfying the preconditions to research, such as widespread awareness of a problem, so lots of research can commence. Nothing that people don’t know exists gets researched. Doing things like haranguing people discourages research because it makes us look like idiots and nut jobs.
the survey is riddled in questions regarding mental health…
you’re right the only thing that we contributed was subject matter and patients scarred for life. nothing at all , lets just forget about that.