"I also work here because I love books, because I'm inveterately curious, and because, like most librarians, I'm not well suited to anything else. As a breed, we're the ultimate generalists. I'll never know everything about anything, but I'll know something about anything and that's the way I like it."
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it's wild that popular discourse around migraines is that there are too many people who claim to have migraines but "just have bad headaches". this is the exact opposite of my experience? i'm still trying to convince several of my friends that their "bad tension headaches" that are unilateral, throbbing, cause light sensitivity, nausea, etc, are migraines lmao. migraine is underdiagnosed and undertreated by every metric i can think of.
this narrative is not harmless! it prevents people from getting treatment that could really benefit them. so i would like it to die. thank you.
As a guy who went to see a neurologist only to "rule out migraines" because I thought I had "tension headaches at worst and also it's not that bad really" only to realize by tracking my headache days that I have very bad chronic migraines just with no aura (most people with migraines don't have them), I co-sign this 100%.
Just starting abortive medications already improved my quality of life so much and now that my doctor started me on preventatives, I might actually be able to have more than a handful of headache-free days each month.
Migraine is frequently misdiagnosed as chronic sinusitis or tension headaches according to research. Mostly because people have a very rigid (inaccurate) idea of what it actually is.
But even if it's not migraine, you still deserve treatment for your headaches. Just because someone else has them worse than you doesn't mean you don't deserve relief.
Learning about the different types of migraine and headache disorders can help you better understand your symptoms and discuss them with you
yeah i found out awhile back that the 'pressure headaches' that i get that 'aren't that bad' (but still leave me feeling sick and dysfunctional all day) were migraines. i now take a low dose of a preventative medication and the number of shitty rain days i have per month has dropped from like ten to two. it's great.
In my experience anyone who has chronic pain of any kind ALWAYS under diagnoses it in part cause people who DON'T have chronic pain always tell them how it's Not That Bad Just Get Over It and it takes a lot of fighting to get anyone (including doctors) to do anything about it. Fucked if I know why. Everyone seems to think we're making it up. I've never met anyone who is making it up.
to give some entirely bizarre context, nigel farage (extreme cunt) has stepped down from his position as MP for clacton (due to a scandal where he received £5 million from a crypto billionaire that could have been laundered) only to run again so that he can prove people like him. and the only person running against him is count binface. who has been a staple of british politics for many years. and now the british press is forced to interview him seriously while he sits there with his binface.
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so one of the largest open source data communities on the internet, data.world, got bought out by a company called ServiceNow, who has decided to fucking delete all of it by July 11th. they've given users barely any notice, no emails, just a fucking banner at the top and a blog post from June that gives barely a month to download your data before they fucking delete it all.
a bunch of archives of incredibly important government datasets like maternal mortality statistics are about to be deleted forever. in a regime where they're known to fudge numbers, we can't trust a lot of the data coming from them to not be altered. open source backups like those found on data.world are vital to being able to verify that the data coming from our government is still intact and not altered. and they're about to delete all of it.
i don't know if we need to start a petition or what. nobody seems to fucking care. there are millions of users on data.world and yet nobody is raising the alarm bells and it makes me feel like I'm going insane. somebody needs to do something. i don't know what to do. it feels like more and more of this world is being destroyed and dismantled. it's not only US centric data, either! it's all sorts of countries from around the world! and they're about to fucking delete everything.
the only things that won't be deleted are private companies who happen to use the paid version of their platform (which isn't accessible data to the open source community; some people have just been using their service to host their own data on privately)
and the kicker? this announcement was made... via an AI generated blog post. so not even any sort of human touch. just a generic, soulless announcement made by a soulless human about to take a wrecking ball to one of the more important websites that exists on the internet.
an example of some of the things that will be deleted on July 11th:
I haven't, I don't really have a reddit anymore. if somebody else would be willing to do that, that would be great. I'm pretty sure it only lets you post with a certain amount of karma now which is annoying
It looks like this has gotten onto Reddit and people are saving the data - but I can imagine researchers who uploaded assets won’t know this, so hopefully can reach some.
There are over 3500 respectable data repositories on one respectable global registry; to a researcher there’s no point in data existing if not findable; if you’re trying to find a new home for your dataset, start there
I’ve been emailing folks at my university about this today, and no one that I have talked to has been previously aware that this is happening.
Here are some of the scripts I’m using to email University Research Librarians and department chairs/assistant and associate deans who I know oversee faculty who use resources from data.world for their lessons:
Email for a Research Librarian: To find a research librarian try running an internet search like: “[College Name] Library Staff Directory” and see who may be a good fit.
Subject: Data.world public archive private purchase and deletion
Hi [Research Librarian or Data Preservation Specialist],
I recently ran into news that data.world has been purchased by ServiceNow, and that ServiceNow is ending public access to these archives July 11th. This is a very large public data archive that I personally used in my undergraduate work several years ago. I don't know much about digital preservation, or how it works at [College Name], but I thought it might be worthwhile to try reaching out.
I wanted to let someone in Libraries know in case current [College Name] students are using data in this archive for their research and need to be notified to save the data elsewhere, and to see if there is anything that [College Name] can do to help with greater preservation efforts.
The archive can be accessed here for now. A login is required, but it is free to set up.
https://data.world/_all/w/datasets
Here is a screenshot with the announcement of the closure of the site. Site users were not notified that access will be ending and would have to be looking at the page regularly to know that access will be terminated.
Please let anyone know who may need to use the site (or who would be interested in trying to preserve it).
Thanks,
[Your Name]
[Your Job/College Affiliation]
[Your Contact Information]
If you know a current department or school within a college that is using data.world archives, this is a template that I am using to contact department chairs or assistant/associate deans of research within specific schools.
Subject: Loss of public data.world access 7/11/26
Hi [Dr. Last Name]
I recently learned that the public data archive data.world has been purchased by ServiceNow and that they are closing public access 7/11/26. [Sentence about how the data is or was used by the department/school you are contacting].
I wanted to make sure this was on your radar in case any students are doing research with this data and need to act quickly to retrieve the data sources they need for their work, similarly for faculty using this data in their research or teaching.
The archive can be accessed here for now. A login is required, but it is free to set up.
https://data.world/_all/w/datasets
Here is a screenshot with the announcement of the closure of the site. Site users were not notified that access will be ending and would have to be looking at the page regularly to know that access will be terminated.
Please let anyone know who may need to use the site (or who would be interested in trying to preserve it).
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I'm not necessarily rooting for the US in the world cup but I do think it would be funny if they made a deep run if only because I feel like, for countries that are actually good at international football, "You lost to the USAmericans" would make for god tier trash talk
Imagine you're from a country where this sport is like a national civic religion and you lose to a bunch of dork ass losers who call it soccer. There's no coming back from that
I thought the USMNT making a deep run and embarrassing some European teams in the process would be the funniest outcome for them in the World Cup but Trump using FIFA's limitless appetite for corruption to get a red card overturned for their game against Belgium only for them to completely embarrass themselves, play way worse than usual and lose by 3 goals is SO much funnier holy shit that's incredible
thank you all gif makers everywhere, yes i WOULD like to live inside that half a second when my otp looked at each other forever on repeat, lovingly color-adjusted to make them even hotter than ever
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