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Reminds me of this guy that cured himself of lactose intolerance. https://www.popularmechanics.com/science/health/a17804128/scientist-painstakingly-documents-hi

Reminds me of this guy that cured himself of lactose intolerance. https://www.popularmechanics.com/science/health/a17804128/scientist-painstakingly-documents-his-own-diy-gene-therapy/ https://www.popularmechanics.com/science/health/a17804128/sc...

stuntkite 5y ago
His YouTube channel The Thought Emporium, is amazing. He just moved into a new lab and I really appreciate what he’s working on and how he communicates it. The robot painting fluorescent proteins is neat and recently he dropped a video demonstrating his adventures making synthetic opal. Apparently the edit made him totally lactose tolerant for over a year and now he has very mild lactose intolerance. He says he hasn’t redosed because he wants to improve the plasmid (I think that’s the right term, BUGFIX probably isn’t right) before he takes another run at it. Here’s his update video from last year on that endeavor. https://www.youtube.com/watch?v=aoczYXJeMY4 https://www.youtube.com/watch?v=aoczYXJeMY4
- faitswulff 5y ago
  Technically a plasmid is kind of like a software patch, but generally they're employed by bacteria and not eukaryotes like humans.
  - stuntkite 5y ago
    Interesting. I have watched nearly all of The Thought Emporium’s videos (so clearly I’m an expert, lol) and I think he uses the term plasmid to describe DNA he’s working on in the crazy bio IDE he uses. I think in this instance he applied it to a yeast that he cultured and put into pills and swallowed. He really is doing some neat stuff though. He’s inspired me to do some small bio hacking experiments and it ALMOST makes me want to go back to college.
    - shpongled 5y ago
      Plasmid is the correct term!
      - stuntkite 5y ago
        I am not being sarcastic when I say thank you for confirming that. If someone didn’t confirm it it would pop back in my head for days, “maaan, you fucked it up and now some other nerds are gonna use the term wrong and that’s really not helping anyone.” heh. Cheers. :)
jcims 5y ago
Here’s his YouTube channel: https://youtube.com/c/thethoughtemporium https://youtube.com/c/thethoughtemporium Amazing and alarming what a smart and dedicated person can do with limited funds.
- aardvarkr 5y ago
  That’s really cool, thanks for sharing! I just watched his video on the WiFi camera and I loved his presentation style
MeinBlutIstBlau 5y ago
I think it's annoying people get upset that people who do this potentially damage their bodies. First of all, it's that individuals body. They can take whatever risks they want. I don't see how trying to alter your own DNA is any worse for you than skydiving. Both have inherent risks, none of which affect others. Secondly, because there is no red tape or ethical scientific practices required, this gives us the opportunity to study some anecdotal evidence and (hopefully) these people donate their bodies for research after death. We can't truly know these affects if we constantly just act so tepid about the procedures. Imagine if we had the scientific process about literally every aspect in human life since the dawn of civilization? We'd still be making bricks with straw, manure, sand, and water because there wasn't a government sponsored test of the quality of "Roman Cement" therefore we should not use it. Some of these people who criticize a lot of science do so just for the sake of disputing it. It's a good thing this stuff happens. The more anecdotal evidence we have, the more likely it can be subject to legitimate scrutiny and understand certain pitfalls that these individuals encountered and why. Just telling these people "you're stupid, it's bad for you!" is an ultimate waste of time and just stagnates data collection.
- tialaramex 5y ago
  > Both have inherent risks, none of which affect others. If you make germline edits, this does potentially impact others - you can have children who inherit the edit. They don't have any choice about that (depending on the edit they might randomly not receive a copy of the edited material, but that's luck) and its consequences in them may be undesirable even if the outcome for you, an adult, was fine and anyway your choice.
  - coryrc 5y ago
    That is the line of reasoning that leads to banning abortions*. People have a right to alter their bodies. EDIT: and preventing young women from choosing sterilization.
    - MeinBlutIstBlau 5y ago
      Precisely. Otherwise if we're going to walk the line of "well even though it's your body, 'us smarter people' say it's bad for you there for you cannot do it" will inevitably lead to the logic of dictating abortion rights as well. This is exactly the logic conservatives use with the Covid Vaccines but because liberals "know what's good for everyone," people shouldn't be allowed to make the "my body my choice" when it comes to a vaccine. Regardless of who is more logically correct in the scenario, the current stance of American liberalism is "my body my choice" only applies in terms of abortion. Which conservatives when they get in power again, will utilize as rationale to make it illegal as many have been doing for the past decade.
DoreenMichele 5y ago
I recently watched the two videos on this (that I'm aware of) and it's the first time gene therapy didn't strike me as macabre Frankensteinian experiments on vulnerable people who will say "yes" to all kinds of crazy stuff out of desperation. Cystic fibrosis significantly impacts gut function and many people with it do poorly with dairy products. I could see this and/or some variation of this being valuable therapy for the CF community while we wait for better answers. Although best known as a deadly lung disorder, the impact on gut function is a major problem that just gets less press but is something people with CF and their loved ones fret about a whole lot. I think if you could do something to improve gut function fairly quickly and semi permanently, you would likely reduce a lot of their other issues as well because people with CF are typically underweight, sometimes severely underweight, and their chronic malnourishment is a major underlying source of their inability to fight off infection.
- jjoonathan 5y ago
  > it's the first time gene therapy didn't strike me as macabre Frankensteinian experiments on vulnerable people That's because it has barely begun to become viable IRL while science fiction writers have been using it as a convenient punching bag for decades -- without ever stopping to ask if they should.
  - DoreenMichele 5y ago
    No, that's because I have a form of cystic fibrosis and I know what I and others like me have been willing to do in the face of that and because I'm aware of real world experiments done on people who were seen as less than human for some reason, such as the Tuskegee syphilis experiments done on Black Americans and horrifying experiments done on people in concentration camps in Nazi Germany. https://en.m.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://en.m.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://encyclopedia.ushmm.org/content/en/article/nazi-medical-experiments https://encyclopedia.ushmm.org/content/en/article/nazi-medic...
- ohbleek 5y ago
  CFTR modulators have completely transformed CF treatment for +90% of patients. Gene therapy is a possibility, however, with there being +1000 possible mutations that can lead to CF, it’s not the clear cut candidate that some of the other rare genetic disorders are right now. The cynic in me also thinks that with CFTR modulators costing ~350k/year, drug companies may not feel incentivized to run the risky gene therapy trials and patients may not want to participate given the dramatic improvement in their lives with current therapy options.
devoutsalsa 5y ago
This is insane. I love it and it terrifies me at the same time.

stuntkite 5y ago

His YouTube channel The Thought Emporium, is amazing. He just moved into a new lab and I really appreciate what he’s working on and how he communicates it. The robot painting fluorescent proteins is neat and recently he dropped a video demonstrating his adventures making synthetic opal. Apparently the edit made him totally lactose tolerant for over a year and now he has very mild lactose intolerance. He says he hasn’t redosed because he wants to improve the plasmid (I think that’s the right term, BUGFIX probably isn’t right) before he takes another run at it. Here’s his update video from last year on that endeavor. https://www.youtube.com/watch?v=aoczYXJeMY4 https://www.youtube.com/watch?v=aoczYXJeMY4

faitswulff 5y ago
Technically a plasmid is kind of like a software patch, but generally they're employed by bacteria and not eukaryotes like humans.
- stuntkite 5y ago
  Interesting. I have watched nearly all of The Thought Emporium’s videos (so clearly I’m an expert, lol) and I think he uses the term plasmid to describe DNA he’s working on in the crazy bio IDE he uses. I think in this instance he applied it to a yeast that he cultured and put into pills and swallowed. He really is doing some neat stuff though. He’s inspired me to do some small bio hacking experiments and it ALMOST makes me want to go back to college.
  - shpongled 5y ago
    Plasmid is the correct term!
    - stuntkite 5y ago
      I am not being sarcastic when I say thank you for confirming that. If someone didn’t confirm it it would pop back in my head for days, “maaan, you fucked it up and now some other nerds are gonna use the term wrong and that’s really not helping anyone.” heh. Cheers. :)

jcims 5y ago

Here’s his YouTube channel: https://youtube.com/c/thethoughtemporium https://youtube.com/c/thethoughtemporium Amazing and alarming what a smart and dedicated person can do with limited funds.

aardvarkr 5y ago
That’s really cool, thanks for sharing! I just watched his video on the WiFi camera and I loved his presentation style

MeinBlutIstBlau 5y ago

I think it's annoying people get upset that people who do this potentially damage their bodies. First of all, it's that individuals body. They can take whatever risks they want. I don't see how trying to alter your own DNA is any worse for you than skydiving. Both have inherent risks, none of which affect others. Secondly, because there is no red tape or ethical scientific practices required, this gives us the opportunity to study some anecdotal evidence and (hopefully) these people donate their bodies for research after death. We can't truly know these affects if we constantly just act so tepid about the procedures. Imagine if we had the scientific process about literally every aspect in human life since the dawn of civilization? We'd still be making bricks with straw, manure, sand, and water because there wasn't a government sponsored test of the quality of "Roman Cement" therefore we should not use it. Some of these people who criticize a lot of science do so just for the sake of disputing it. It's a good thing this stuff happens. The more anecdotal evidence we have, the more likely it can be subject to legitimate scrutiny and understand certain pitfalls that these individuals encountered and why. Just telling these people "you're stupid, it's bad for you!" is an ultimate waste of time and just stagnates data collection.

tialaramex 5y ago
> Both have inherent risks, none of which affect others. If you make germline edits, this does potentially impact others - you can have children who inherit the edit. They don't have any choice about that (depending on the edit they might randomly not receive a copy of the edited material, but that's luck) and its consequences in them may be undesirable even if the outcome for you, an adult, was fine and anyway your choice.
- coryrc 5y ago
  That is the line of reasoning that leads to banning abortions*. People have a right to alter their bodies. EDIT: and preventing young women from choosing sterilization.
  - MeinBlutIstBlau 5y ago
    Precisely. Otherwise if we're going to walk the line of "well even though it's your body, 'us smarter people' say it's bad for you there for you cannot do it" will inevitably lead to the logic of dictating abortion rights as well. This is exactly the logic conservatives use with the Covid Vaccines but because liberals "know what's good for everyone," people shouldn't be allowed to make the "my body my choice" when it comes to a vaccine. Regardless of who is more logically correct in the scenario, the current stance of American liberalism is "my body my choice" only applies in terms of abortion. Which conservatives when they get in power again, will utilize as rationale to make it illegal as many have been doing for the past decade.

DoreenMichele 5y ago

I recently watched the two videos on this (that I'm aware of) and it's the first time gene therapy didn't strike me as macabre Frankensteinian experiments on vulnerable people who will say "yes" to all kinds of crazy stuff out of desperation. Cystic fibrosis significantly impacts gut function and many people with it do poorly with dairy products. I could see this and/or some variation of this being valuable therapy for the CF community while we wait for better answers. Although best known as a deadly lung disorder, the impact on gut function is a major problem that just gets less press but is something people with CF and their loved ones fret about a whole lot. I think if you could do something to improve gut function fairly quickly and semi permanently, you would likely reduce a lot of their other issues as well because people with CF are typically underweight, sometimes severely underweight, and their chronic malnourishment is a major underlying source of their inability to fight off infection.

jjoonathan 5y ago
> it's the first time gene therapy didn't strike me as macabre Frankensteinian experiments on vulnerable people That's because it has barely begun to become viable IRL while science fiction writers have been using it as a convenient punching bag for decades -- without ever stopping to ask if they should.
- DoreenMichele 5y ago
  No, that's because I have a form of cystic fibrosis and I know what I and others like me have been willing to do in the face of that and because I'm aware of real world experiments done on people who were seen as less than human for some reason, such as the Tuskegee syphilis experiments done on Black Americans and horrifying experiments done on people in concentration camps in Nazi Germany. https://en.m.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://en.m.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://encyclopedia.ushmm.org/content/en/article/nazi-medical-experiments https://encyclopedia.ushmm.org/content/en/article/nazi-medic...
ohbleek 5y ago
CFTR modulators have completely transformed CF treatment for +90% of patients. Gene therapy is a possibility, however, with there being +1000 possible mutations that can lead to CF, it’s not the clear cut candidate that some of the other rare genetic disorders are right now. The cynic in me also thinks that with CFTR modulators costing ~350k/year, drug companies may not feel incentivized to run the risky gene therapy trials and patients may not want to participate given the dramatic improvement in their lives with current therapy options.

devoutsalsa 5y ago

This is insane. I love it and it terrifies me at the same time.