No it’s not all available yet apparently…let me just say folks my comments are nothing but guesses…
We have to wait and I’m sure the folks here are working on the next steps or studies it looks to as this just confirms what most here were alluding to could be happening in pfs we don’t know…
We’ve read the full paper today, and we’re very pleased to see clear evidence of critically relevant gene expression differences in PFS patient derived tissue.
This is a landmark paper for us and paves the way for further research. It has confirmed significant elevated tissue-specific expression of the AR in PFS patients. Many related gene expression differences were also detected with symptomatic relevance to a lot of symptoms that have not been acknowledged appropriately in other avenues of research.
I would personally encourage patients not to get inflated or deflated based on what’s in this paper, as it’s a complicated topic and doesn’t currently have a direct application for patients in terms of treatment. It’s also important to not imagine the scope of the study was beyond what it was. This was to evaluate gene expression differences in PFS patients and progress closer to a mechanistic understanding of the pathology. It should not have been expected nor was suggested to deliver a potential treatment.
We’re very optimistic about what this means for the future of our condition. This study should be considered another important step in understanding, of discovery into our condition, not an overwhelming obstacle too complicated to overcome as has been suggested elsewhere in this thread. This has always been known as a complex condition as 20 years of self-experimentation with extremely minimal results, and severe harm, has demonstrated.
We will be reading the paper further today and providing our takes through our website, and making an official post here in the coming days.
Please do not think that all of this rests on a few scientists turning out papers about this condition though. Every patient can contribute, and now is an opportune time to do so. With such a major publication being released, and with so many patients and families now speaking publicly through our YouTube channel, there is a great opportunity to seize the initiative over the coming months. Anyone interested in coming forward to speak publicly or contribute to our efforts is encouraged to do so.
Best,
Mitch
Is there anything going on at this point in time?
I mean, research-wise.
So Baylor II has to give us hope. Hope for further studies. Hope for therapeutical efforts. We all need hope for recovery and treatment.
You’re looking at years away.
For those that don’t get better with time or get even worse its bad news. Our efforts 'in my humble opinion should be focused on gene therapy. I know we shouldn’t be speculation etc but its hard not too especially when things are so desperate.
Gene therapy targeting … all of 3000+ Expression altered genes?
I don’t know how the others feel about this, but to me this study is unequivocally bad news.
Another question: did they use the same emthodology that @Hanru_Sun doctors equipe used to have his gene profile (curiously, he found “2000+ gene alteration”) ? How come he was able to have the results in a matter of few weeks?
Not a self-boasting, but actually in China we are much more efficient in many aspects right now, haha.
So the real question is, does this study prove PFS is a real thing to the naysayers? And also was there a control group in this final part of the study?
So how can, in some cases, 1 pill suddenly induce thousands of altered gene expressions?
He hasn’t presented their methodology. But given that he was speaking about mutations when discussing the outcome, it is safe to say that this is not remotely the same thing. This is about gene expression not genotyping (which is what he had done, I assume). Genotyping is fairly easy. There are companies who offer a basic form of genotyping for little money. All who participated in the 23andMe project did this.
Differential gene expression analysis is much more complicated, expensive and time-consuming.
I understand that this is exciting times, but I urge everyone to stay calm and refrain from too much speculation. There will be more commentary on the study and its implications in due time.
Does the result of the study match your expectation?
Would you say it’s good or bad news?
The Study will be the base for every further research.
This cannot be stressed enough.
It largely matches expectations and the results should not be a surprise to anyone who has followed Awor’s and later Axolotl’s posts and who have read the “Post Androgen Deprivation Syndrome” paper on our main page. It literally says:
This is precisely what this study has found.
I don’t want to comment any further at this stage. As I said this will be put into context in due time after proper reflection.
EDIT Please note as per my reply below, this post was from a sockpuppet account from another registered user.
I’ve been battling PFS for 6 years now. I’ve also been lurking around here for quite some time, so Hi you all.
This study proves what I’ve been suspecting all along: it is a much, much more complex condition we would have ever guessed. That we have thousands genes with altered expression is absolutely crazy and virtually unheard of. It’s even beyond what I thought, and I was never optimistic about PFS.
It’s very disappointing that a relatively simple study like this took almost 10 years to be carried, but I’ll leave the most likely reasons of this to your immagination.
Another thing I was totally right about, it’s the role of inflamation and immune system in this syndrome. But obviously it leaves us with very little clue about what can we do about it. And if combined all together, it raises concers at least my opinion about potential impact on lifespan of PFS sufferers.
As the most savvy among us have been preaching for years now, this goes way beyond hormones.
The bottom line is that a potential cure is decades away, and the best we can hope for (the ones that decide to stick around at least) is symptomatic relief through further drug intervention once specific pathways are discovered.
Worst case scenario just became real.
Bye
This is a sockpuppet account which is a clear violation of our user terms. Pretty disappointing behaviour.
Is there anything hopeful here?
I would like to address some of the concerns that members have had on this thread.
Thousands of genes being dysregulated is to be expected. There are members here that are physically and mentally falling apart. This is entirely unsurprising, and has been predicted by the admins here.
That being said, it does not mean that this problem is so complicated that it is beyond solving. As the AR heavily regulates many other genes, it is entirely possible (and also likely) that most of this dysregulation is the downstream effect of the dysregulation of a few key genes.
I also do not think a potential cure is decades away. Progress in biotech has been happening at an exponential pace in recent years. Numerous new tools are being used to approach treating diseases and even in disease research, that have sped up the timelines (of solving a disease) considerably. I think we have reason to be optimistic. If we, as a community pull together and do our bits, I think we can all make it out of this mess.
Right now, considering how sparse our resources are, it is key that we all get behind this rock and push together, in the same direction. At this point, the direction we need to go in seems very clear, and it’s just a matter of everyone deciding to go there and going there.
We are currently organizing further research efforts, and will announce them once things are more concrete. We need people contributing to awareness projects, as this condition still suffers from a lack of acceptance. If this is something you can do, this would help profoundly. Please contact me or any of the other moderators if you would like to contribute.
’ As the AR heavily regulates many other genes, it is entirely possible (and also likely) that most of this dysregulation is the downstream effect of the dysregulation of a few key genes"
This gives some hope to the entire community.