2023 Sep 25: NBCNews.com: "A blood test for long Covid is possible, a study suggests" (by Erika Edwards):

More than three years into the pandemic, the millions of people who have suffered from long Covid finally have scientific proof that their condition is real.

Scientists have found clear differences in the blood of people with long Covid — a key first step in the development of a test to diagnose the illness.
The findings, published Monday in the journal Nature [below – S.], [...] is among the first to prove that "long Covid is, in fact, a biological illness," said David Putrino, principal investigator of the new study and a professor of rehabilitation and human performance at the Icahn School of Medicine at Mount Sinai in New York.

[...]

Several differences in the blood of people with long Covid stood out from the other groups.

The activity of immune system cells called T cells and B cells — which help fight off germs — was "irregular" in long Covid patients, Putrino said. One of the strongest findings, he said, was that long Covid patients tended to have significantly lower levels of a hormone called cortisol.

2023 Sep 25: Nature: "Distinguishing features of Long COVID identified through immune profiling" (by Jon Klein, Jamie Wood, et al.) Abstract:

[...] Here, 273 individuals with or without LC [Long COVID] were enrolled in a cross-sectional study that included multi-dimensional immune phenotyping and unbiased machine learning methods to identify biological features associated with LC. Marked differences were noted in circulating myeloid and lymphocyte populations relative to matched controls, as well as evidence of exaggerated humoral responses directed against SARS-CoV-2 among participants with LC. Further, higher antibody responses directed against non-SARS-CoV-2 viral pathogens were observed among individuals with LC, particularly Epstein-Barr virus. Levels of soluble immune mediators and hormones varied among groups, with cortisol levels being lower among participants with LC. Integration of immune phenotyping data into unbiased machine learning models identified key features most strongly associated with LC status.

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I got a second steroid epidural 13 days ago (Monday, Sept 11) and I am now much better. Like 60% better. I'm still dealing with quite a bit of discomfort, and I have to take it somewhat easy if I want to avoid actual pain. But now I can actually do a certain amount of moving around and even lifting. I can now do more than one thing on a single trip to either the kitchen or the bathroom without having to go lie down in between for half an hour to rest and let the pain die down. This is tremendously exciting for me, because it means leaving the house is not a two and a half hour project just to get ready. Unfortunately, the thing for which I have the least tolerance is sitting, so I'm still spending a lot of time lying down, interspersed with chunks of time on my feet.

This is, alas, just temporary. I've been told I can expect this to last maybe 3 months. So I have, figuratively speaking, hit the ground running to do all of the things that I haven't been able to do for the last year plus. Some of this has been personal medical care, some of it is professional stuff, some of it is stuff around the house. Like, for instance, just sitting in a chair and putting paperwork into file folders in the file drawer has been largely beyond me, so I have a backlog of filing to get through; relatedly I discovered in doing filing that I hadn't entirely finished the process of getting the paperwork done for some CEs that I'd taken last year and had to get that finished; and so on. Consequently I have been burning the candle at both ends. Whoo. I am very tired.

I have a bunch of honest-to-god technical debt, that I've been trying to pay down. Like, I haven't had a working backup system for one of my crucial servers for, uh, *mumblesinembarrassment*. So that's something I now have at least a kluge for. (For Siderea's adventures in filesystems, see 1, 2, and
3 ). I'm using an external drive like an animal instead of a proper backup server, but it will have to do for now. I've been procrastinating updating my share buttons to support Mastodon, but I did look into it, and there are a few outstanding technical/political wrinkles to doing that. Also I have been dealing with, in retrospect, an almighty amount of Patreon nonsense, some extremely technical, about which I should do a little roundup and post something.

Oh, and I may be back in the market for a unicorn fully managed linux VPS hosting where I nevertheless get root (or even better one where I don't get root but they are willing to do custom installs for me). I thought I had that worked out, but the company in question does not seem to be actually doing any managing, and various things have broken that I am quite certain are not my fault, like their auto payment system for charging my credit card my monthly service fee. I would have thought they'd be highly motivated to keep that part functioning. So I'm not feeling really good about that vendor's reliability, and I'm hoping to trade up. Not looking for something run as a favor from a friend, hoping for an actual SLA. Feel free to recommend.

Unfortunately, the terrible ergonomics of my situation have been catching up with me. I've been using a lot of voice dictation, and now my larynx is feeling tuckered out, in that way that is not an irritation of the mucous membranes, but a kind of deeper mechanical exhaustion I recognize from very excessive singing in my feckless youth. My shoulders now hurt when I type on my laptop in bed or try to type into my phone. I did try a little sitting up and typing at my desk today, which is an incredible relief to my shoulders and upper body more generally, but I only got about 10, 15 minutes of that in me before the Extremely Bad pain turns back on.

But part of why everything hurts when I try to write is because I've been doing so much of it. Some of that is professional stuff, and some of it was my dropping everything to draft and submit public comment to the CDC before the ACIP meeting at which they would be deciding for whom they would be "recommending" (== ordering the insurance companies to cover the cost of) COVID boosters (My letter worked! Or at least the CDC did what I told them to ;), and some of which I'm hoping to post here. Here's hoping I can get something out the door soon.

I've been doing some reading and attended that symposium I mentioned. And I've been complaining about stuff and things. And explaining to people why they're wrong on the internet.

There's more I could go on about, but I think I'm going to conserve my physical capacity and maybe go write something more edifying and entertaining instead.

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(h/t @hugh@ausglam.space)

Patrons!

You probably just got an email – or you may be about to get an email – from Patreon with the bland subject "Updates to Patreon's Privacy Policy" that you might, therefore, be inclined to ignore. Don't. It explains you are going to be opted into a new "feature" which you might reasonably find objectionable in two weeks time:

We just announced some exciting community features that aim to transform how fans connect among the communities that matter to them most. As part of this, we're introducing new member profiles that are visible to fellow community members on Patreon and will help you show off your unique fandom.

To prepare for these changes, we're making updates to Patreon's Privacy Policy, effective October 4, 2023.

Further explanation about what exact information will be exposed to your fellow Patreon users and, crucially, how to turn that feature off are available at https://support.patreon.com/hc/en-gb/articles/18591059681805

To quote @thatandromeda@ohai.social

oooh, people who took a look at venmo's early mistakes with trying to make a payment processor into a social network and thought, what a great idea

Also, I would like to add that in addition to the obvious privacy obnoxiousness of Patreon doing this effectively retroactively to anyone who has ever commented ever on Patreon, this is yet another example of Patreon obnoxiously competing with me as a creator who has her own independent community space for her readers – this one, here on Dreamwidth.

Patreon relentlessly pushes creators to move more and more of their assets and their resources onto Patreon servers, which Patreon controls and the creator does not, and from which the creator cannot extract that data ever again. Patreon does not give us creators any way to download conversations or comments from Patreon, nor migrate them to another platform. Patreon would very much prefer that my only way to reach my patrons was through Patreon, and that me and my patrons do all of our communication through Patreon, so that basically Patreon can hold my relationship to my patrons hostage, to ensure that I do not leave for an alternative crowdfunding platform.

(As a side note, I would much prefer Patreon compete for the loyalty of creators like me by offering things other platforms don't offer, but Patreon seems to be determined to regress to the mean and abandon all of the things that made it unique and thus uniquely valuable, and make itself indistinguishable from its competition.)

This is one of many compelling reasons that I very much prefer NOT to receive comments on my posts over on Patreon or DMs through Patreon.

I mean, another one of the compelling reasons is that Patreon does not reliably get me email notifications of comments or DMs, so if you try to communicate to me over there, gods only know if I will ever find out about it.

And now we have the new compelling reason that Patreon will randomly do things like turn on features that make public to third parties personal information about you that hadn't previously been public, linked to historical comments that you've made in the past on things that I (and other creators you patronize) have posted.

Yeah, I recommend that you just don't comment on my posts over on Patreon. It's better for us both if you don't. It's clearly – now, with hindsight – a bad idea and has unanticipated privacy risks, for you. And, personally, for me, I prefer to be communicated with via Dreamwidth, the platform I've chosen, which doesn't up and do dumb disruptive things to the users, which has the features I prefer (including the ability to download and backup comments), and where I get reliable notifications. Works great. Be sure to turn on email notifications if you do comment or DM here, so you get notified of my response if/when I reply.

Perhaps ironically, Dreamwidth is a social platform already, and does have profiles, so if you do comment here with a Dreamwidth account, readers, including anonymous ones, can click on your username or icon and be taken back to your own journal and your own profile and see what's there. So roleplay accordingly. (Feel free to use a burner account.)

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