Would hiring a company to do methylation studies be useful to us? I found this one around me. I’m just not sure how different this is compared to the Baylor studies. Is it much more thorough? Am I completely retarded and missing something huge. I get this is the proper way to do things. But can we find out faster? Or maybe just have more avenues going.
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That’s gotta be a damn good find!
I’m hesitant to tag Axo and Awor but I’m sure someone will be along…
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I like this idea. Can you find out the cost per person?
Maybe we can start crowdfunding project out of this.
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There will hopefully be new avenues soon. We will move to outreach early next year with our survey data and a very comprehensive literature review that is currently being compiled by Axolotl. We are very hopeful (and this was supported by scientists that the admins are in contact with) that the data and the literature review will spark interest in scientists and institutions with the necessary skills and equipment to investigate this problem.
Hold tight, this is all in the works! And you have directly contributed to this endeavor by participating in our survey. Thank you for that!
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what’s the timeline for funding generally from these institutions?
Hey,
There’s a lot of steps in the chain here that mean this just isn’t something we can do directly through a service like this. The genomic methylome is a per-cell and cell line affair. It’s not just a massive data analysis and interpretation task on the back end, but literally cutting, storing, preparing and processing symptomatic tissue first. We absolutely need the expertise of professors with strong history in this area at an appropriate centre to design and conduct future investigation of this kind.
I know a lot of people want to shout at us about this tired topic but I don’t think it’s any secret we’re also frustrated by the pace of the ongoing full genome expression study - although I think unanticipated complexity is a factor that can be inferred. We’ll be seeking to work in a fashion that entails more transparency and greater feedback to patients regarding goals and timelines etc. We’ve been working extremely hard, including completing the technical survey work that would amount to tens of thousands commercially, to do as much as we can do on our side. As @Northern_Star notes we’re getting to the point now where we’re going to be able to shift strategy to get things moving based on this. On a personal note I’m really working flat out at the moment and considering my condition this is taking a toll.
I don’t think anyone would (or should) want me or anyone to just be dumping a load of pubmed links no one will read, have access to or be able to interpret and saying “this this and this so fund us doing xyz on our own”, nor is that something we consider possible. We want to present clearly communicable opportunities that are fully in concert with professors with demonstrably appropriate expertise. I am not promising anything but I am pleased to say it appears (thanks in part to our data) things may move faster than anticipated in this regard, and hopefully in the coming months we’ll talk more.
If anyone is has been putting off the survey please take part as a matter of priority if at all possible. It helps.
Best,
Axo
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It sounds promising, and again, thanks for all the work you and the admin team are investing in this.
I know it’s early days, and I don’t wish to speculate on the details, which I know you will let us all know in due course.
I do wonder whether any future endeavours will ‘double up’ on the full genome study which is currently underway (or concluded and undergoing peer review), in anticipation of delays or worse, or cover new territory.
I guess doubling up has the benefit of ensuring the results of the study are… ‘unadulterated’ through mechanisms which we may well suspect are at play, as well as reconfirming whatever results come to light. Furthermore, the simple knowledge that we are ‘rechecking’, or planning to recheck results may help insure the integrity of the undertaking.
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I’ve also spoke about this privately redoing the full genome test on PFS patients. It wouldn’t be a bad thing to have two different data points from different sources on the matter but then again it’s all to do with funding.
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Thanks for your time,
Everything in these studies is always such a secret it would nice to know the processes at least. Years in the dark makes people kinda wanna take action especially certain personalities. I mean, more than just a survey and donating. I’m sure you know how you working towards this makes you feel like you’re progressing something even if its also making you feel like a piece of shit. We don’t have that. Very grateful for all you do, don’t get me wrong. It just feels like 2 people are doing all the work here. Me, I personally love trying to interpret pub med articles way past my intellectual calibre pretending to understand and acting like I’m one step closer to magically curing myself. I also think working towards transparency would make everyone feel involved and its a great idea. Would definitely make me want to donate more. As for the private study- when it comes to there being more steps is it more than just the tissue prep and having expert opinion. I’d honestly love to know all the steps in the chain. I figured this when I proposed it I just wanted someone to step in and answer, why can’t we do more if it looks to be available, in a faster fashion. Even if not as good. Maybe it could help in someway. Especially when bigger studies that take years find nothing. Do the rest of us have to be such useless bystanders?
I’m going to enquire and see! If it’s even possible and how much.
Thanks for being so informative. Wish I could do more than a survey!