This scientist treated her own cancer with viruses she grew in the lab

https://www.nature.com/articles/d41586-024-03647-0


Virologist Beata Halassy says self-treatment worked and was a positive experience — but researchers warn that it is not something others should try.

 

glad it worked for her, hope it can work for others

 

The lack of access to an equipped lab and years of skills and experience is the main reason why others shouldn't try, but actually people should totally try that if they face a similar situation. In fact there should be far more trying of this type going on. This, and Marshall's bold experiments and other things like them.

I have reached the point where I am fully in favor of completely ending the restrictions and monopoly of medicine on health issues. Liberalize everything, end the chokehold on innovation. A mostly free for all kept in check only by transparency of information and market forces.

The current systems built to deal with health care have basically stopped working, to the point where they are worse than almost any other alternative. They have become completely conservative, they exist only to maintain a hierarchy and to protect the balance of influence and power. It has become an aristocracy, nothing like the fiction of a meritocratic technocracy that people pretend it is. Nothing at all.

In coming years it will happen anyway. Not only with AI but as it will allow biotechnology to go faster, the current systems are simply not built to take advantage of this. People who will innovate will have to work around those systems, all those systems will really do is impede for the sake of concentrating power within the church of medicine. So might as well go wild on it. We're already in catastrophic decline and morass.

Yes, it would cause a lot of problems and suffering. But we are comparing to a baseline of immense systemic cruelty and crass indifference to misery, even a system that has become an enabler of the worst impulses of human nature and egomania-drive ignorance. The systems we have are obsolete. They simply don't produce viable returns anymore. In fact it's been decades of constant decline and regression and the trend is sharply downward.

It's similar to the crisis of democracy, where feckless neoliberalism and its "you do you" attitude and trickle-down economics are pushing people to choose authoritarianism, which are literally worse in all aspects, enabling the very worst impulses of human nature, of war, greed and violence. If the current systems push people towards the worst alternatives, then they have to be discarded entirely to enable a new baseline that actually works. It may end up not working, but it's already working about as poorly as can be.

Beautifully put in No country for old men: If the rule you followed brought you to this, of what use was the rule?

 

Is there a monopoly of medicine on health issues? Plenty of non-medical people supply health solutions. If someone makes a drug they are free to give to it somebody to try as far as I know. The reason they don't in general is that they don't very much want to fork out 10 million dollars when they are found to have encouraged the use and the other person drops dead. The restriction that I am aware of is that you cannot sell drugs claiming that they will treat an illness, and therefore people cannot buy drugs for that illness, unless there is some reliable evidence of safety and effectiveness. But that does not stop people trying whatever they like.

The justification for the restriction is easy enough to see because otherwise all sorts of useless and toxic things would be for sale. The problem if anything is that it is not stringent enough because people can sell things like GET and CBT for ME/CFS without there being evidence for safety and efficacy - and they do.

 

And already are through loopholes and skirting the rules. The alternative medicine industry is ever growing, and “wellness” influencers (many of which have messaging ripe with ableism) tend to be extremely good at selling products.

 

It's heavily regulated through professional associations and government and quasi-government institutions, yes. So is access to the title of MD, which is a requirement for any medical practice, and is heavily restricted through access quotas at medical schools and so on, largely to maintain high wages.

Pretty much the issue. The idea is that those will protect the public. In reality they are pathetically ineffective at it.

There are issues with that. Many. The problem is that the current system has all the same issues, sometimes even worse. Those systems and institutions are completely unresponsive to those problems, behave like aristocratic fiefdoms more than anything. Or cartels.

It's probably academia that is the bigger problem. The model has just long reached its limits. But it wouldn't be nearly as bad if the medical profession was not that much of an echo chamber as to allow tens of millions of people like us to be completely neglected. And that's just one part of the problem. There are so many horrors out there, in something that should have non.

The far better alternative would be to make health care accountable, transparent and giant errors like the massive abuse of so-called evidence-based medicine pushing blatant pseudoscience reined in. But that's in the same category as my much-beloved gold-pooping pet unicorn. When systems not only fail miserably but get completely stuck in dealing with that chokehold, worse alternatives usually develop, and one particular disaster has been the constant creep of garbage pseudoscience getting locked in with the power of law.

There are no good systems here. Only slightly less worse ones. But what we have right now is just terrible. It's so obvious how MDs are forced into complying with blatant BS, in large part because they can't go against the system, even when it's wrong, or face ostracization. Things like boasting how only vulnerable people are dying of COVID, then pushing COVID, which makes people vulnerable, "immunity debt", "infections are good for you", and all the damn lying, like "kids don't get infected, or transmit" and so on. Things that should only happen in completely unregulated industries. And yet it's precisely the heavy regulations that seem to make things worse here.

 

The selling of things is regulated yes, but I am not aware of any regulation of providing things for people to try if they wish. The fact that it is almost impossible to get hold of prescription drugs other than through official channels simply reflects the fact that nobody is likely to provide these free of charge without recommendation. As soon as there is recommendation and/or a charge there is an ethical duty reflected in law. That applies whatever qualification you might hold. It is formalised if you belong to a professional body but the law applies even if you do not.

In other words the restriction simply reflects the fact that nobody is that keen on handing out things that as far as we know are likely to do more harm than good. On average anything that is not part of a normal diet or normal activity is likely to do more harm than good.

 

Blog article by Sara Riggare, expert patient, patient researcher and researcher at Uppsala university in Sweden. She lives with Parkinsons and has published on her own self-experiments

Patient self-experimentation makes the headlines!
https://www.riggare.se/2024/11/11/self-experimentation-makes-the-headlines/

 

If someone uses the laboratory where they work to experiment on themselves, I wonder who pays for it. Did she work out of hours and buy her own materials?

In the early days of modern science, laboratories tended to be owned by gentleman scientists, but that would rarely be the case today. So in some way anyone experimenting on themselves would have to be subsidised by the owner of the laboratory, such as a university, government department or commercial operation.

 

If they gets access to the laboratory as a perk of their job, it’s a payment for their employment and not a subsidy for their self experimentation. At least from the perspective of an economist.

 

The reagents necessary to use in the lab can get quite pricey depending on what you’re doing.

Many grants do offer some level of discretionary funding for interesting side questions that aren’t directly covered by the grant purpose, though. I suspect that’s what was used here, since I doubt one person could have afforded all the materials out of pocket unless they had family money or some lucrative side hustle.

Or the research was all in line with what the grant was awarded for, she just took home some of the final product. [edit: plenty of experiments generate a lot of “waste” that doesn’t end up getting used for unavoidable reasons]

I say this as someone who spent a few weeks begging other researchers to let me experiment on my own blood samples and ran into several obstacles. Though generally this kind of thing is not impossible—lab members sign on to be healthy controls for studies all the time.

 

"Ethics of self experimentation" if she's not doing anything that would be restricted because it harms others I don't see why anyone should complain. Even if it ended badly.