Similarly, there is now extemely strong evidence that the Epstein-Barr is causal in multiple sclerosis. The vast majority of people are infected with EB, with most never having symptoms. However, a nonsignificant minority aren't. A large-scale study of data covering 10 million US military service people found that those infected with EB were 32 times more likely to develop MS.
Epstein-Barr has long been thought to be a culprit in everything from MS to dementia to especially CFS. But that's a real problem: there are no antivirals developed that are particularly effective against it. 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.
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.
I was 'lucky' in that I had my first relapse in the last semester of my Master's program, so I could limp along and finish the degree and decide not to pursue a PhD. An academic career was right out, especially as a first-generation student.
I decided to go to gradschool after the big relapse took me down. I’m going to do this in spite of MS. Fuck MS. My MS has hit me in both eyes and ruined my old career (I was a pilot).
Anyway, I’m going to push myself to build new neurons faster than it bashes the old ones. I’m learning Spanish, do some programming for school every day, and walk a lot. It helps - even if my vision is pretty bad I feel it really helps.
I did 2 years of Tysabri and then switched to Lemtrada in January. One more dose of that and then theoretically I’m done. Going backpacking this summer in Spain as a big “fuck you” to MS. I’m slowed down quite a bit but not beaten. I will get better or die trying.
It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
My old career is over (hard to fly if you can’t see well), the new one is going to be software engineering/ AI stuff in spite of this shit.
Whatever you do don’t give up. MS is a cruel bitch, but I plan on outlasting this asshole. We’re not far from a real restorative cure.
> It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it. In my case, I'm a librarian/archivist who's likely to be one of the last people living with a memory of the beginning Web + some of its predecessors (I'm female and from a family with multiple supercentenarians - I have a fair shot at making it to the Web's 100th anniversary) and I think that the training and first-hand knowledge to sort through and add context to what we have from those eras (especially pre IA and Google) is going to be very important but also that interest isn't going to really pick up for another ~30-40 years, so my third responsibility is to live a life that maximizes my odds of living and functioning into my 80s+. First is my own wellbeing and second being that of my family/people.
My diagnosis also completely shattered my worldview and I've had to rebuild my values and morals from the ground up and it turns out that a lot of the goals I used to have are odious to me now.
> Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I don’t quite have the emotional regulatory weirdness but my ability to deal with bullshit, pettiness, or any of that minor sort of tyranny cruel people try to impose is basically non-existent now? I don’t know if that’s the result of immense emotional, spiritual, and personal growth, or if MS clipped the wire that allowed me to ignore bullies? I don’t know but I’m definitely a lot more radical now. What’s weird is I cry a lot more now, and I never used to before, really? It’s ok, it’s good to cry - but I had some toxic masculinity perhaps that MS beat out of me lol.
Also, do you use Anki? I have found that actively practicing with Anki and one of those stupid brain games apps has really helped me build back some of my memory skills. The one thing I routinely forget now is people’s names? But I figure I’d rather have 1000 Spanish words than remember the name of the mailman like I used to. My apologies to, Randy was it? It’s weird, I can remember just fine to write code, I can still do math - the main impediment in school has just been visual… but why the hell can’t I remember names anymore lol? Maybe I just can’t be bothered to give a damn except about people who are important to me?
> I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
Man, mine were great. The first time ON just wiped out one eye, but they couldn’t figure out what happened or if it was MS… well they figured it out 4 years later when it took out the other one. I had even gotten a waiver and was back to flying with one eye for a few years. I was fully blind for a bit after the second relapse. Was pretty terrible, but way better than some poor folks. I at least can still move etc. and my eyes have been improving for a couple years, albeit slowly, but now, while I cannot drive (let alone fly) I’ve got enough vision to go back to school.
> I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it.
Dude are you my girl twin? This is basically why I went back to school. Losing my job wiped out a massive part of my identity - I’d been a professional pilot since I was 19 and had literally not seen any other thing that I wanted to do. Basically I had to completely reinvent and recreate who I was through all this. Anyway, the big epiphany for me was major changes in how I view the world - particularly with regards to what is important and where I fit into it. I am not going to go down without a fight even if my only purpose is to serve as an example to others.
I was a workaholic. I still like to work but my motivations and the reasons I go are much different now. My wife makes enough to support our family now, albeit not as comfortably as before, but good enough. When I finish grad school the money I make from whatever I do will be able to be spent on fun, experiences with the kids, and helping in our community - that’s a massive change from where we were before, basically just focused survival or getting more money for money’s sake and toys.
Getting sick was like crossing an event horizon for me in terms of personality. I remember who/what I was, but there is no going back and I couldn’t see myself today back then. I am fully a different person now. The essence may be the same, but I am irrevocably changed. That’s ok - I wouldn’t trade my life for someone else’s, but man, MS is a bastard.
> It’s ok, it’s good to cry - but I had some toxic masculinity perhaps that MS beat out of me lol.
I don't even have the 'toxic masculinity' excuse since I'm a girl, but I was also emotionally constipated. It definitely takes some getting used to.
Anki is great - spaced repetition was my best friend in school since I focused on languages/linguistics. Unfortunately my main memory issue seems to be remembering conversations I've had and forgetting/transposing random words. My memory is still objectively good, but it used to be amazing so it chafes. I know you understand since your vision was like that.
> Dude are you my girl twin? This is basically why I went back to school. Losing my job wiped out a massive part of my identity - I’d been a professional pilot since I was 19 and had literally not seen any other thing that I wanted to do. Basically I had to completely reinvent and recreate who I was through all this. Anyway, the big epiphany for me was major changes in how I view the world - particularly with regards to what is important and where I fit into it. I am not going to go down without a fight even if my only purpose is to serve as an example to others.
I might be! I was also very career focused - I had people pushing me towards academia and assuming I was going to be a professor since I was six years old. My entire sense of self was tied up in my intellectual and productive capacity. I am much angrier and, like you, much less tolerant of injustices now. Shamefully, a large portion of that is because I have experienced a life altering event through no fault of my own and I have more sympathy for others now. It's also made me more aware of the advantages I have and absolutely furious when people who don't have them are taken advantage of.
> My wife makes enough to support our family now, albeit not as comfortably as before, but good enough. When I finish grad school the money I make from whatever I do will be able to be spent on fun, experiences with the kids, and helping in our community - that’s a massive change from where we were before, basically just focused survival or getting more money for money’s sake and toys.
I'm the sole breadwinner for both myself and my sister who is bipolar and can't hold down a job. We have no other help. We're drowning; I hate it here. It's to the point where I'm contemplating trying again to make myself like/tolerate men sexually because God, a spouse or second income would make things so much easier and there is no female dating pool here. Then again, men don't stay with crippled women so that's probably not a great idea either.
I do spend a lot of my free time and mental energy on local matters.
> I am fully a different person now. The essence may be the same, but I am irrevocably changed.
I 100% am different. I view my former self with horror, honestly. I was an arrogant, nasty little shithead. It's a lot easier to speak up now, though. Oh no, you don't like what I say and you might not hire me or say mean things? I wake up every day not sure if I'll be able to walk, anything else seems like small potatoes in comparison.
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.
I was on the biochem track in undergrad. I was particularly interested in disease metabolics and cloning.
I switched to tech and entrepreneurship because it scratched more itches, provided substantially more money, didn't come with the stresses of academia, and could conceivably put me on a path to returning to biochem with loads of resources and full research independence.
I see biochem companies getting venture funding now, but that wasn't always the case. And they're still unfavorable relative to tech ventures.
I still don't think the grad school + academia path is comfortable enough for those that take it. It's a real labor of love, and I admire those that stick with it.
Plenty of alternatives to academia, but then you're working on a company's projects. And yeah, the cost of equipment, not to mention consumables, is prohibitive.
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.
"Money needs to go to employing more people in the field."
Provide the employment (at decent wages) and the people will get the training. Provide the education and recruitment without the decent employment and you'll have a lot of ex-job people in other jobs.
> Throwing more money at a problem does not always yield a faster or improved solution.
This cliché probably holds if you are increasing the funding of a single group - doubling Firefox’s income would not improve Firefox.
If you are funding independent groups, chasing different paths and solutions, then more money likely helps. Kind of like VC funding.
Of course having independent groups all chasing a single solution is also a single point-of-failure problem - the dominant amyloid hypothesis of Alzheimer's springs to mind as an example of a lack of diversity.
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
To contribute to fundamentally new knowledge in software or CS also can require quite a lot of background learning though. I think the bigger culprit is that biomedical studies are fucking expensive. There needs to be a big upfront commitment, so there is naturally going to be more reliance on credentialism/gatekeeping. If 99% of random self-driven software projects turn out useless to the rest of the world, that's no big deal, and then we just hear about the 1%. But it's not possible in biology.
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.
Is there any evidence of this? I have seen the data but it seems also likely that the same immune issues that cause ms could cause a lapse of resistance to eb.
EBV reactivation also plays a major role in ME/CFS, a condition that can affect people almost as severely as MS, but at any age. HHV-6 and 7 infections have also been implicated.
It's incredibly strong evidence that it's a required but not sufficient condition. I've seen professionals have serious suspicions that the single EBV-negative MS case from the study [1] OP mentioned was a false negative, but apparently it's not easy to confirm.
A single EBV-negative MS case. While there were 955 MS cases that developed in the 0.5M that were EBV-negative at the start of military service. You'd expect there to be about 50. That's pretty compelling evidence.
