5 ms·

With further development, these particles could offer an inhalable treatment for cystic fibrosis and other diseases of the lung CF is not "a disease of the lun

With further development, these particles could offer an inhalable treatment for cystic fibrosis and other diseases of the lung CF is not "a disease of the lungs." It's a genetic disorder that significantly impacts all epithelial tissues and mucus membranes. This includes the lungs but is not limited to the lungs. It also includes the rest of the respiratory system, plus the gut, skin and reproductive organs. You would at a minimum need to also genetically edit the gut of CF patients to give them something vaguely resembling a normal life. The CF community is well aware that the gut issues are significant and life threatening. The rest of the world, including medical researchers unfortunately, seems to have not gotten the memo. Having said that, the first news of gene therapy that I read and actually liked was a guy who came up with a home therapy for his lactose intolerance.* So we potentially are at a point where you could edit both gut and lungs genetically and do some serious good for such people. * https://www.resetera.com/threads/guy-cures-himself-of-lactose-intolerance-via-home-made-virus-biotech.23013/ https://www.resetera.com/threads/guy-cures-himself-of-lactos...

deleted 4y ago
[deleted]
arcticbull 4y ago
> Having said that, the first news of gene therapy that I read and actually liked was a guy who came up with a home therapy for his lactose intolerance.* Is there any independent evidence or documentation of this? A medical study? Something corroborating? I'm not saying you're wrong, but rather extraordinary claims require extraordinary proof, and I didn't get that from watching the linked YouTube video.
- DoreenMichele 4y ago
  It's one guy who borrowed time in a lab and treated just himself and documented it and explained the science adequately to make me stop going "Gene therapy: Clearly an evil plot." He has a Patreon and a YouTube channel and does science videos. Edit: He did do a follow up video 2 years ago. https://youtu.be/aoczYXJeMY4 https://youtu.be/aoczYXJeMY4
  - arcticbull 4y ago
    I don't think any of this proves this is legitimate, however. Like I said extraordinary claims require extraordinary proof. Having a patreon and doing a follow-up shouldn't be the threshold.
    - DoreenMichele 4y ago
      You can chalk it up to anecdotal. That's always an acceptable means to dismiss anyone self managing their health issues better than doctors would do and making the mistake of talking about it online. The videos make sense to me. I'm also self managing my health and get ridiculous amounts of crap off of internet strangers who also think I shouldn't be allowed to tell my story for some reason, even when other people are sharing personal health anecdotes and being well received.
      - johnnymorgan 4y ago
        This, there is a fallacy at play that individuals are unable to provide insight into health issues without an MD attached to their name and the backlash is strong. Tbf this is partially the fault of new age medicine crap however it shouldn't be the default reaction. Probiotics was the vertical for me that I cannot have a rational conversation with health professionals, and all they did was clean my gut up and helped my son. The how/why no one is really keen on diving into.
        DoreenMichele 4y ago
        The videos make sense to me because they are scientifically solid but in mostly layman's terms. I have a genetic disorder and a child with the same disorder and a child who is a carrier and I know a fair amount about such things but can't always follow the medicalese, etc. But I could readily follow the process he described of inserting the gene into a virus delivery mechanism (viruses being RNA -- ribonucleic acid -- and genes being DNA, aka 2 RNA) and how it impacted the cells lining the gut and this made the whole idea of gene therapy much more approachable for me personally and less scary. People with CF routinely volunteer for medical experiments out of desperation and I respect their right to do that while simultaneously worrying about the real motives of the experimenters and how much to trust them. CF is a dread disease with a short life expectancy and I worry about such people being viewed like human lab rats and how that could go really bad places. So I have enough background knowledge I don't feel his videos are a scam and I'm encouraged because many people with CF don't tolerate dairy very well. So even addressing lactose intolerance in people with CF would be life enhancing for many of them.

deleted 4y ago

[deleted]

arcticbull 4y ago

> Having said that, the first news of gene therapy that I read and actually liked was a guy who came up with a home therapy for his lactose intolerance.* Is there any independent evidence or documentation of this? A medical study? Something corroborating? I'm not saying you're wrong, but rather extraordinary claims require extraordinary proof, and I didn't get that from watching the linked YouTube video.

DoreenMichele 4y ago
It's one guy who borrowed time in a lab and treated just himself and documented it and explained the science adequately to make me stop going "Gene therapy: Clearly an evil plot." He has a Patreon and a YouTube channel and does science videos. Edit: He did do a follow up video 2 years ago. https://youtu.be/aoczYXJeMY4 https://youtu.be/aoczYXJeMY4
- arcticbull 4y ago
  I don't think any of this proves this is legitimate, however. Like I said extraordinary claims require extraordinary proof. Having a patreon and doing a follow-up shouldn't be the threshold.
  - DoreenMichele 4y ago
    You can chalk it up to anecdotal. That's always an acceptable means to dismiss anyone self managing their health issues better than doctors would do and making the mistake of talking about it online. The videos make sense to me. I'm also self managing my health and get ridiculous amounts of crap off of internet strangers who also think I shouldn't be allowed to tell my story for some reason, even when other people are sharing personal health anecdotes and being well received.
    - johnnymorgan 4y ago
      This, there is a fallacy at play that individuals are unable to provide insight into health issues without an MD attached to their name and the backlash is strong. Tbf this is partially the fault of new age medicine crap however it shouldn't be the default reaction. Probiotics was the vertical for me that I cannot have a rational conversation with health professionals, and all they did was clean my gut up and helped my son. The how/why no one is really keen on diving into.
      - DoreenMichele 4y ago
        The videos make sense to me because they are scientifically solid but in mostly layman's terms. I have a genetic disorder and a child with the same disorder and a child who is a carrier and I know a fair amount about such things but can't always follow the medicalese, etc. But I could readily follow the process he described of inserting the gene into a virus delivery mechanism (viruses being RNA -- ribonucleic acid -- and genes being DNA, aka 2 RNA) and how it impacted the cells lining the gut and this made the whole idea of gene therapy much more approachable for me personally and less scary. People with CF routinely volunteer for medical experiments out of desperation and I respect their right to do that while simultaneously worrying about the real motives of the experimenters and how much to trust them. CF is a dread disease with a short life expectancy and I worry about such people being viewed like human lab rats and how that could go really bad places. So I have enough background knowledge I don't feel his videos are a scam and I'm encouraged because many people with CF don't tolerate dairy very well. So even addressing lactose intolerance in people with CF would be life enhancing for many of them.