Yes, @Rmoney96, the ancestry option is sufficient.
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The clear goal is to rid us of this terrible condition. The plan with the 23&me testing is to build our evidence base, enable us to seek governmental funding that could well lead to a treatment that will give you your life back.
I can understand your reluctance to spend what is today - Black Friday - the equivalent of the cost of a pair of shoes on saving your life, but it is what it is and nobody is telling you that you must do it.
Sorry if that sounds flippant, I’m not trying to be rude, but if we say we need 250 samples and say we have 10, what’s your motivation level? Is it higher or lower? If we say we have 100 and we need 101, are you gonna do it or leave it to someone else.
The gist is more samples is better.
Update - I just sent Tonster an apology for this post, not my finest hour.
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No need to feel offended. I submitted my data long ago. It’s just a suggestion that might lead to a higher engagement of the community, cause sadly it seems that you haven’t received enough datasets yet. I leave it with that. That said: Thank you guys so much for your efforts!
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Hi UKguy82,
Is this the product you are talking about ?
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We currently have 33 genomes from mainly PFS patients, and another 14 from PSSD patients. I will attempt a first run at around 50 PFS genomes. As we all know, PFS is a very variable disease, both in scope and intensity. As written earlier, PFS is what is called a variable trait disease. From a genetics point of view, this indicates that a number of genes are likely involved. The more genes that are involved, the more samples we will need to cut through the statistical noise. The following picture shows a “Manhattan Plot”, which is a common way of representing GWAS results:
One can clearly see the noise I am talking about in this sample. Incidentally, this was from a study which looked at 1.1 million cases. I am not suggesting we need a million cases, but I hope that this example allows one to appreciated that even with 50 genomes, we will need a lot of luck to find something useful. It may be that we’ll need at least a few hundred genomes before we start to see something.
This work won’t produce an instant cure, but it will for sure contribute to better understanding our disease and hopefully provide some direction for future investigation. One of the key things we need to achieve is an animal model of PFS (rat, mouse). That will only be possible if we understand the genetic drivers of PFS, i.e. what makes US different from those many other guys, who apparently can take these substances without a problem. If we know those drivers, it should be possible to genetically engineer an animal so it develops PFS. Ideally, we would want it to get PFS quickly, and not have to wait 5 years. That means, we need to figure out which genes predict a quick onset of strong PFS, which further limits the available genomes.
Notice that I interchangeably am talking about genes, even though the data we have are snp’s. These represent locations on our chromosomes. Those locations will help find the underlying genes, but also here additional work is involved. Please appreciate that these kind of studies typically are run by a team of full time scientists. I am not a scientist, and doing this in my spare time. I have a rough understanding of what I am doing, but may run into limitations due to time and/or knowledge. If I reach that point, I am intending to get scientists involved to help. This will likely require further funding. If you are interested in this work and it’s objectives, you may want to save your donation money for this. If we get to the point where we need help, the funding will be collected through the Foundation, specifically ear marked for this study.
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Thanks, Awor!
Guys, there you have it, straight from the horse’s mouth, what we need and why it is important. Unfortunately, we are faced with a very complex problem that we will not be able to solve on our own and which is expensive to investigate. Awor and others have done a great job so far on a small budget putting this problem on the map in the scientific community, creating the Foundation and funding studies that so far have shown that we are looking in the right direction and that our basic idea about the drivers of this condition are correct.
To drill deeper and to move faster, we will need much more money. This project is an attempt to potentially be in a position to receive grants from federal institutions. It’s obvious why this is highly important. The resources of our small community are limited.
Ukguy82 has spotted an excellent opportunity for people to get this test done on the cheap. Now it’s up to each and everyone of you here to do your part. We all need to work together here, we will need the support of everyone. We have only ourselves to blame if we do not support the incredible research initiatives that people from this community have started.
Personally, this is my 11th year of PFS. A lot of people get better initially, but after a certain period many are stuck in this condition or even getting worse. This problem won’t go away on it’s own and it’s unlikely that we will solve it by accident trialing supplements or meds without having a clear target. That’s why we need this research to hopefully one day treat this mess. The clock is ticking. Let’s do something about it!
Please everyone check out this thread and participate in the project. The process is simple and fairly cheap.
Thank you!
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Well this offer is still on! It runs until 5am on the 26th. This is a top chance to join the others here who’ve already dug in.
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@Rmoney96 - it’d be brill if you could get involved in the project! Expires 5am on 26th. So - time running down, but still chance to get it at the low price.
What about ancestry then putting it into another paid site to get the health stuff from 23 and me? (Ends up being cheaper)
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You only need the ancestry test for our study.
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But I mean from ancestry.ca
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Huh, I don’t know.
Does anyone else know?
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We need the 23AndMe data-set for the study. This is the data in use, and users have bought, so hopefully you can join in.
Purchased, just waiting for the delivery! Should someone make a Black Friday post about how it’s on sale or is that annoying ?
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that’s the one buddy and you only need to choose the ancestory option.
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I often feel a bit helpless in the fight to find a cure for pfs/pas, but I donate to the foundation regularly and contribute to this forum.
All I can say is that by contributing to this project we all have a chance to directly help the research for a small amount of money and you also get to find out about your own family tree by getting the ancestory report which is an added bonus.
The people organising this project and everyone who gives their dna data are heroes.
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Thanks for contributing to the project! This is great. Thank you.
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After reading Awors post a second time then looking by myself at studies, most studies have thousands of samples. The ones that have a large sample size (n) are the most successful studies and are the ones with the most citations by other researchers and are in the best scientific journals. We have about 50 data sets right now according to Awor. While it’s better than nothing, we really need to pull together as team. We absolutely need to give this a shot and try to pull together much more raw data results from the members on here.
Imagine this, we pull together 500 data samples. Awor and Axolotl run the data through the high tech software. We start seeing variations that stand out through the statistical noise. We check out the SNPs. Some of the SNPs suggest a strong genetic/epigenetic component. This would be huge. It would launch us forward in terms of funding. We all know it’s going to take a lot more money to fund studies for a treatment if Baylor comes through. The NIH has money. If our community provides some kind of possible evidence for a genetic predisposition then the NIH will fund it or partially fund it at the very least.
Please consider spending $60-70 on getting a 23andme test kit. We all complain here but this our chance to do something about it. I will say it point blank, no one will care much about this if there isn’t any definitive scientific evidence. It’s sad that we obviously suffer many visible side effects but doctors and scientists won’t care. There’s too much money involved from 5ari and SSRI sales and too many politics. This is our chance.
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Well said - this is exactly it.
I’ve been thinking this over guys, and I think we should have an ambition to get 500 data samples, but with a realistic ambition of getting 200 as soon as possible. I’ve thought of some ideas.
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We could e-mail all users about the 23 and me project with a link to 23 and me and explanation of what we are trying to achieve.
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We could have a running total of the number of data sets we have and the target somewhere prominent on the website.
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Contact Dr David Healy at Rxisk as he might be able to add the information about the project on his blog. If anyone can add the info on Accutane forums as well. Perhaps even the pfs foundation could add it to their website.
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Maybe set up donations to pay for the kits for people. If it meant that we got closer to the 200 data sets, I’d be willing to donate.
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If everyone contacts their pfs buddies and keep nagging them to do it.
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