I had a severe health problem that I treated myself with broscience (doing research like a gymbro buying supplements to get hyooge) and some alt medicine that needed a clinic. I have pre and post treatment test results showing a problem and the problem in remission, with a degree of success that was unheard of, even in that particular clinic for that particular issue.
Had this conversation:
“So Dr, you’re saying that either I have done something medicine believes to be impossible, or I was never sick”
“That’s correct”
I looked into commercialization of my protocol, but unfortunately, I used mostly stuff available OTC, which would no longer be available OTC if it were determined to be ‘a drug’ by success in a RCT, and I would thus lose access.
So the process of getting good data is explicitly counterproductive to my goal of staying healthy.
Can I encourage you to write it up on a patient forum somewhere? Or I’d host it on my blog if you want. If luck matters this much I think it’s worth recording every success, even if they rarely replicate.
Description of the thought process and general techniques used to generate an answer for myself puts those techniques at risk. Discussion of the specifics definitely my access at risk, and no I don’t need a second opinion.
I’ve thoroughly investigated disclosure, to the point of talking to industry VCs and CEOs about the challenges I’d hit spinning out a biotech startup to commercialize it. For a number of reasons, such a startup is a lame idea.
Since I don’t do social media, the possible exposure/engagement from simple disclosure isn’t valuable to me.
Instead, I’ll offer an unrelated anecdote, if the structural/market issues that cause the following issue are fixed, I assert that my therapy will rapidly emerge from a more credible source with no effort on my part required, so work on this one instead:
I met someone who was involved in an attempt to commercialize ‘cell therapy for diabetes’. Someone else can go find the papers if they care.
Basically, they sat in the lab and tried ‘start with stem cells, convert into beta cells, implant in mouse; diabetes fixed’ they then moved to ‘peripheral blood cells, treat blood to turn into stem cells, treat again to turn into beta cells, inject in mouse, cells float through blood and park in the pancreas; diabetes fixed’
At this point they said ‘hey let’s see about spinning this out for commercialization’, and failed hard. I literally met people who were in the meetings. For market reasons, the project is simply not viable as a business. They talked to everyone who could listen, found no investors, gave up, and went back into the lab.
Last I checked the state of the research was ‘make gmo mouse that can’t produce beta cells period, pull off blood, make stem cells, gene edit stem cells to fix missing gene, turn into beta cells, inject into mouse; diabetes fixed’
Scientists are literally stunting on diabetes in the lab while people die because they can’t afford insulin.
I had a severe health problem that I treated myself with broscience (doing research like a gymbro buying supplements to get hyooge) and some alt medicine that needed a clinic. I have pre and post treatment test results showing a problem and the problem in remission, with a degree of success that was unheard of, even in that particular clinic for that particular issue.
Had this conversation:
“So Dr, you’re saying that either I have done something medicine believes to be impossible, or I was never sick”
“That’s correct”
I looked into commercialization of my protocol, but unfortunately, I used mostly stuff available OTC, which would no longer be available OTC if it were determined to be ‘a drug’ by success in a RCT, and I would thus lose access.
So the process of getting good data is explicitly counterproductive to my goal of staying healthy.
Can I encourage you to write it up on a patient forum somewhere? Or I’d host it on my blog if you want. If luck matters this much I think it’s worth recording every success, even if they rarely replicate.
Description of the thought process and general techniques used to generate an answer for myself puts those techniques at risk. Discussion of the specifics definitely my access at risk, and no I don’t need a second opinion.
I’ve thoroughly investigated disclosure, to the point of talking to industry VCs and CEOs about the challenges I’d hit spinning out a biotech startup to commercialize it. For a number of reasons, such a startup is a lame idea.
Since I don’t do social media, the possible exposure/engagement from simple disclosure isn’t valuable to me.
Instead, I’ll offer an unrelated anecdote, if the structural/market issues that cause the following issue are fixed, I assert that my therapy will rapidly emerge from a more credible source with no effort on my part required, so work on this one instead:
I met someone who was involved in an attempt to commercialize ‘cell therapy for diabetes’. Someone else can go find the papers if they care.
Basically, they sat in the lab and tried ‘start with stem cells, convert into beta cells, implant in mouse; diabetes fixed’ they then moved to ‘peripheral blood cells, treat blood to turn into stem cells, treat again to turn into beta cells, inject in mouse, cells float through blood and park in the pancreas; diabetes fixed’
At this point they said ‘hey let’s see about spinning this out for commercialization’, and failed hard. I literally met people who were in the meetings. For market reasons, the project is simply not viable as a business. They talked to everyone who could listen, found no investors, gave up, and went back into the lab.
Last I checked the state of the research was ‘make gmo mouse that can’t produce beta cells period, pull off blood, make stem cells, gene edit stem cells to fix missing gene, turn into beta cells, inject into mouse; diabetes fixed’
Scientists are literally stunting on diabetes in the lab while people die because they can’t afford insulin.
Thankfully, the Chinese seem to have figured out how to thread this needle: https://economictimes.indiatimes.com/industry/healthcare/biotech/healthcare/chinese-scientists-develop-cure-for-diabetes-insulin-patient-becomes-medicine-free-in-just-3-months/articleshow/110466659.cms?from=mdr
Edit: paper here https://www.nature.com/articles/s41421-024-00662-3
https://www.nature.com/articles/d41586-024-03129-3 this is separate research. It looks like this will happen, and it will come from somewhere other than the west.