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May 2025

Today I've had to travel to London for an urgent CT scan, thanks to some unusual symptoms I've been having, to look for any obvious signs of various cancers. Great.

"The same newspapers that had a hernia over the winter fuel allowance will next month cheer on taking lifeline benefits from disabled people"

https://www.theguardian.com/commentisfree/2025/may/26/labour-winter-fuel-benefits-child-disabled

"there is an entire political and media ecosystem that decides which groups “deserve” help and which ones don’t"

"A Labour government is in power and we are still debating whether the state should help children who are cold, hungry and dirty"

This morning I read a superb essay by Jeffrey Boruszak on an ethically complex episode of _Star Trek: Voyager_. It's in the Lively edited collection and is really worth your time if you want to think about "Tuvix".

This week, 4 emails from the same platform/editor about conducting a peer review. This REALLY gets my back up and is far too aggressive. People have other things to do or aren't well/behind. You need to give people some space to breathe.

Today is my second anniversary of starting haemodialysis. The worrying thing is how this time zooms by. It also marks almost halfway to the lower bound of dialysis life expectancy. I have every intention of surpassing that though 😂

OK, let's get this show on the road. About to implement a major version upgrade on the main Knowledge Commons production service. What could go wrong?

Here we go again! This week I am giving a keynote at the Swedish Association of Information Specialists Conference. I will be talking about the history of collective funding models for open access publishing and introducing the new project and platform that I am working on at Knowledge Commons...

A slide for my talk at SFIS showing a picture of me and the talk title "On Collective Funding Models for Open Access"

I appreciate the quality of this image is terrible, but today's tech work on the "IDMS" stack at Knowledge Commons will, when this flow is implemented, allow login using any university SSO system. The flowchart shows some of the complexity.

An unreadable flowchart

Today, I am reviewing copyedits to Eve, Martin Paul, ‘Shadow Libraries and Pirate Infrastructures’, in Critical Infrastructure Studies & Digital Humanities, ed. by Alan Liu, Urszula Pawlicka-Deger, and James Smithies (Minneapolis: University of Minnesota Press, 2025). Then it's IDMS stack work!

Pleased to say that, as of tomorrow, I will be a full employee of Michigan State University, working as Technical Lead on Knowledge Commons. I've been interim since January and it's nice to pick this up officially.

Sundays, here, are usually health maintenance days. Sort and stock check the dialysis supplies, clean and change the central line dressing, order incoming prescriptions. Takes most of the day.

I also have to have antibiotics ready on hand in case I get an infection for max speed. Wot fun.

A pack of antibiotics

Just been advertised an "immersive" experience of the Titanic and I'm not sure these people have thought much about their metaphors...

One of the perhaps little less fair criticisms of my book by a reviewer was that I hadn't cited this.

Less fair because it hadn't been published at that time! Anyway, I have it now.

It was actually a good tip - as was almost everything this reader commented upon.

The cover of Late Star Trek by Adam Kotsko. It depicts a Star Trek communicator on an amber background. The subtitle is "The Final Frontier in the Franchise Era".

@mgmcquillan.bsky.social have you ever considered renaming RF/RP/R*? I never know what it's actually called and the names are confusing...

Research Fortnight 8am Playbook in with a sharp analysis of what all this grim immigration talk means for unis:

“Illustratively, a 6 per cent levy on higher education tuition would represent an increase in the cost of coming to study in the UK" - the UK Home Office notes

Aaaargh.

As @deevybee.bsky.social just said: we don't want the NHS to be "exciting" for heaven's sake.

It would just be nice if, when I go to A&E with a crucial emergency, they have the capacity to provide emergency dialysis so I don't die.

There are very few artefacts that can't or shouldn't be cited.

The one that annoys me most is being told I can't cite an unpublished PhD thesis. These are often really good!

With Wikipedia, you should probably cite the original source.

Often, in fact, more thoroughly reviewed than other work...

Yeah! My latest book has been named as a finalist in the annual SHARP Book History Prize. Even if I don't win, that's exciting (for me)!

A series of book covers in the Final of the 2025 SHARP Book History Prize

Next week I'll be giving the keynote online at the annual conference for the Swedish Association for Information Specialists. Hope to see some of you there!

From a survey of 57 universities by Universities UK:
- 50% have cut courses
- 25% have made compulsory redundancies
- 20% have cut spending on research
- 18% have cut staff time on research
- 15% have cut student bursaries or hardship funds

From last repost.

This government is totally reckless and dangerously ignorant when it comes to universities.

If a regional uni folds, it will probably be the biggest employer in the area. Further, all industries that supply the uni will lose biz. Industries partnered with the uni will also leave. Unemployment hell.

It's a sunny weekend of two halves. Part I for me is a book proposal/sample chapter peer review in the sunshine. Part II is some catchup technical stuff for KC that I want to play around with.

However, health is slowing me down. Pain is bad today and I clearly have an infection. On antibiotics.

The firing of Dr Carla Hayden, the Librarian of Congress in the US, is a disgusting move by the administration. Really despicable.

Somewhat amusingly, a good 40 years since this would last have been the case, my mother monitored my sleep with a baby monitor last night! We used it so she could hear my dialysis alarm if it went off in the night and I had passed out.

Hurrah! New rheumatoid arthritis drug has arrived: upadacitinib. Really hope it works. Same class as baricitinib, which I had before, but caused BK virus to run riot and destroy my kidneys. This time, there's no kidney left to lose...

Pictures of the drug Rinvoq (Upadacitinib) in its packaging, which is yellow and black.

Today is ⚡⚡DISASTER SIMULATION DAY⚡⚡ at Knowledge Commons. We'll be setting some parameters shortly and documenting the recovery process for the main site and Works. Any shortcomings in our processes should be highlighted by this. If it goes badly, we will have to rectify and try again another day.

"Instinctively, you wouldn’t expect a country urgently seeking economic growth to want one of its world-leading industries [universities] to start scaling back its activities. But that is where we find ourselves."

Good work UK government.

From Research* 8am Playbook.

Today is a day off work for a bank holiday here in the UK. I have written a review of @elikaortega.bsky.social's binding media. Much printing out and scribbling and rewriting in the process of these earlier drafts.

A copy of Elika Ortega's book, Binding Media, atop a stack of printed pages with handwritten scribbled notes and amendments over them

The med I am changing to is the same class of drug that caused the virus to run rampant and destroy my kidneys.

The renal department say there's far less risk this time because there's nothing left to destroy 😩

This week I am changing my rheumatoid arthritis medication from tocilizumab to upadacitinib. This second time of being on tocilizumab brought a resurgence of the bowel paralysis that I had before when on it. The co-occurrence seems more than chance co-incidence. Really hope the new drug works fast.

I had a sad experience this morning. We bumped into a guy we often meet on dog walks and we got talking. He said that he wished there was more compassion in the world. And we had a space where people cared for each other.

And that's why he voted for Reform UK.

I said that they want to replace the NHS with an insurance system.

He said "I have no particular reverence for the NHS. I take care of myself and use the health system as little as possible".

This is a widespread subconscious attitude that blames disabled people for their need.

A taxi driver in Canterbury asked me a while back what I'd done to get kidney failure. "Did you drink or smoke or take some illegal drugs or something?"

It's widespread.

But what hope did he have for Reform in government? When we asked what they hoped to achieve, what did he say?

"I guess we'll see, won't we?"

That was it.

I asked what he thought should happen about the small percentages of vulnerable people?

He thought there should be no laws for them. It should all be dealt with by charities. "They used to do this."

I have huge fear for the near future.

I mean, aside from the terrible biometric privacy invasions, ethereum can take up to 30 mins to transfer and verify. That's going to be mega useful while you stand at the checkout with your World debit card...

"In manufacturing, spot checks are used to determine whether error rates are acceptable."

Err. This assumes that you can spot errors in research. Which you can't, because the results are usually novel.

Unless it means technical aspects. Eg looking for data tampering/image manipulation.

But I'm not sure about this either. There ARE repurcussuons already for researchers who are caught doing this. Retractions and you institutional sanctions are there already.

And which institutions have resources for extra people checking their own researcher's work? Labour overhead would be huge.

I've been feeding Luka his dinner by hand as a way of getting him to bond with me. It takes him a long time to build up to eating from my hand. Lots of trails on the floor where he darts near to me, then away again. We'll get there. It's just so slow to gain his trust, the poor traumatised boy.

Luka, a black Labrador-esque dog, possibly crossed with some Husky. He has his mouth open in a smile here and is lying on the floor.

"What I’m grappling with now is the mismatch between that vision of hope and the actual world we live in—a world that seems increasingly hostile to generosity, or even to reflection."

Next Wednesday at Knowledge Commons is ⚡⚡DISASTER DAY⚡⚡!

We'll be simulating a total systems failure and resurrecting our sites and data from our backups. I'll write up the results when we're done, but this should give us confidence in our disaster-recovery procedures.

"King Charles III
King Charles says cancer diagnosis made him ‘one of the statistics’"

Guess he means "percentage of people accessing private healthcare".