Comment by jkingsman
2 years ago
> EBV research has been a backwater in medicine
Truth. I moderate a forum for people suffering from Mononucleosis and the overwhelming feeling is abandonment and fear. Granted there's some inverse survivorship bias -- people who feel well supported and educated by the medical system usually don't post in support groups -- but it's so hard seeing so many people suffering for so long (SO LONG -- years of fatigue and malaise, in many cases) for something that has basically no first-line therapy.
Academic disciplines and medical research being famously kind to disabled people entering them too, right?
With most of these patients living decades after diagnosis, you would imagine that a reasonable chunk of them would give the rest of their life to researching a cure for their disease.
Yet, while it seems common to do charity awareness fundraisers at marathons, it does not seem common for people to go learn biochemistry and work on solving the problem directly.
Compare that to tech, where a huge chunk of the people here have probably written a computer program to solve some itch of theirs. Saying "I'm doing a charity fundraiser to fix the print preview bug in libreoffice" would be crazy.
I wonder if perhaps these people all have so little useful productivity left that it isn't even worth starting to learn biochemistry?
Abandoning one’s livelihood to spend years in poverty studying advanced science at university in the distant hope that in a few decades you might contribute to a cure is a little different from taking a few weekends, or even a few months of weekends, to scratch a programming itch.
Also it's absurdly difficult to be an academic with a chronic disability, speaking as someone with a chronic disability (MS) who was diagnosed in grad school and who left the sector because of it.
Moving multiple times, as is usually necessary during the post-doc years, means moving away from your support system and interrupting your continuity of medical care. Your activities of daily living require more time: You can't spend 12+ hours a day in a lab if you need to sleep for 12 hours a day. You aren't usually paid enough to pay for all the little extras that make life easier as a disabled person: No delivery services, no supplements, no helpful but extra costing medical services like massages/PT/etc. And stress usually worsens your prognosis: Academia's reliance on competition and stressing out post-docs combined with stress being associated with relapses was one thing that made me nope out. I'm not risking my ability to walk for your institution's prestige.
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Indeed, the path to a research career — necessary for the grants and facilities you’ll need to test your hypotheses — involves such high barriers that you would almost need to already be on that path by your freshman year in undergrad.
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GP does have something right, though. Throwing more money at a problem does not always yield a faster or improved solution. This is well-known in software, but maybe not in other fields.
Money needs to go to educating and recruiting more people to the field. It is not as accessible as programming, and so is harder, but the same concept applies.
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I can't think of many people who've learned to program to fix a bug that's bothering them. and learning to program in your free time is much easier than switching careers, getting a PhD and securing funding for your lab.
nevertheless, I know a number of people with my genetic disorder (Ehlers-Danlos syndrome) who have become researchers, doctors and PTs because of it. but that's a genetic disorder, so it hits you early enough in life to sway your choice of major.
also, while I get what you're saying about having "little useful productivity left," it comes across as a bit insensitive.
We don't gatekeep tech. Literally anyone can create a PR and submit it to an open repo for consideration.
You can't do the same for biotech. You need a PhD, a reputation, a ton of funding, a bunch of papers, to be even considered for "this person has a clue about this medical issue and might have an answer".
Listening to maintainers talk about their experiences dealing with random weird PRs from random weird submitters, I'm not sure we're doing it right by not gatekeeping it more ;)
It’s not gatekeeping, it’s being able to contribute by having foundational knowledge.
Anyone can (and people often do) make big contributions in health, but it’s hard without deep knowledge.
Not everyone who does software engineering needs a computer science degree.
Meanwhile if I head out to the pub on the weekend I hear people post cancer diagnosis waxing lyrical about how they’re beating their breast cancer with surgery+chemo/radiotherapy with a diet high in antioxidants, ignorant of the fact that one of the ways radiotherapy and chemotherapy works is by sctually causing oxidative damage, so they’re working against it. One of the many ways that doing your own research is counterproductive
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The time required to test/verify any “answer” in medicine is years or decades and not seconds/hours/days like in software development.
And well experimenting without being almost entirely sure of what you’re doing (and even then sometimes) might have very terrible outcomes.
Principally barrier to entry in the field due to high costs, low iteration rate, required space, safety of operation, and poor information sharing practices in the field.
That's what I would guess. Because otherwise, there's the concerned uncle effect: unaffected agent who has close to maximal aligned incentive.
Programming is much, much easier to learn to a professional level than biochemistry, and open source is much, much cheaper and easier to enter and navigate than medical academia/pharma industry, and adding a software feature is (generally) much easier than discovering or developing a drug.
I think it’s a valid question but expectations have to be tempered by the question of how many people have the means to follow through. Not many are in a position to go (back) to school for a doctorate just to start working on the problem 5-10 years later.
Someone suffering a debilitating illness (often later in life) is probably only slightly more likely to be able to contribute useful research here than someone actually already dead.
What with them suffering the debilitating illness and all, and being well past the age where it would be natural to do a major life change like become a medical research.
You might as well be wondering why Ukraine isn’t encouraging pregnant women to go to the front. I mean, what else do they have to do?
Given the high requirements to enter the field, and a likely mismatch of interests between many of the patients and the interests required, it would probably be more effective to try to fund some researcher directly. Identify someone doing high-quality research in an adjacent area and offer a direct grant of $50k or something to research towards a cure.
Getting access to the resources required for infectious disease research without qualifications is difficult.