Newest thoughts →

March 2025

A serious effort actually to "transform" to OA publishing, as opposed to the failure of "transformative agreements".

The idea is to reinvest cancelled library subscriptions into OA titles... at scale. Hundreds of journals at once, without APCs. Several publishers involved. #UKSG2025

Tough weekend.

On strict fluid restriction to practice for a trip away. I will only have short haemodialysis every other day.

Dialysis takes fluid off, to sub for the kidneys making urine. Fluid overload gives heart attack.

So I can't drink tea, eat apples, porridge, soup, loads of other things.

Surprisingly much, much harder than it sounds. So many foods are quite "liquidey" when you eat them. Taking loads of pills? Have to do it virtually without water.

But it's hot! I want some water! Tough.

Today, we will go to the cinema to see the filmed version of the stage play of _Dr Strangelove_, with Steve Coogan in the title roles.

Gentlemen, you can't fight in here! This is the war room!

Something appealing about a film of a play that is based on a film.

If you read the original piece, there are some good points, amid the hatchet job and ad hominem attacks. Although the total hatred for and bitterness towards universities just shines through.

This weekend's reading is Robert W. Gehl's /Weaving the Dark Web/. It's nowhere near as immediately readable as @susansegfault.bsky.social's /Tor/, but does get going. The framing of "legitimacy" gives interesting angles but is presented too bluntly IMO.

What do I mean "bluntly"? Well, it sometimes feels as though the book is more about the definition and discussion of legitimacy than about the dark web.

The cover of Robert W. Gehl's Weaving the Dark Web: Legitimacy on Freenet, Tor, and I2P. It features the main heading text in light blue above the subheading in light yellow and the author's name in red. This is overlayed on abstract squares of muted colours.

"The curriculum shall not rely on or reinforce stereotypical assumptions about trans people.”

It is difficult to understand what exactly the OfS finds objectionable about this, ...

https://www.researchprofessionalnews.com/rr-news-uk-views-of-the-uk-2025-march-ofs-judgement-on-university-of-sussex-opens-a-can-of-worms/

especially as in a recent employment case, the Court of Appeal accepted the submissions of the Equality and Human Rights Commission that stereotyping could amount to a form of direct discrimination.

Huge congratulations to Helen! This book has been a very long time in the making (She wrote ‘Rachel Speght’s Polemical Life’, Huntington Library Quarterly, 65.3/4, pp. 449–63 in 2002!) and it's great to see it out in the world.

Sorry for early morning talk of urine.

When your kidneys fail, you no longer pee or produce urine. Totally strange thing to get used to. So, during dialysis, you have to take off that fluid. But we're not designed to lose fluid that quickly and it makes your BP drop.

I just feel SO much better. I have energy, can drink fluids much more liberally, and it doesn't take up my daytime at all.

Drat. Had a serious blood pressure drop during dialysis for the first time ever. Didn't pass out but had to stop early and do emergency saline. 79/48

Hilarious that they think that any technical or legal measure will stop teens from accessing social media. And what policing/justice resourcing is there to deal with violations? Just unenforceable.

Thinking about university "credit transfer". It's a difficult prospect, though I know many places do it already and the OU was a pioneer. But it definitely challenges the holistic nature of a degree programme, which may mean a loss of coherence in some subjects.

https://www.qaa.ac.uk/news-events/news/qaa-publishes-deep-dive-report-on-achieving-credit-transfer-at-scale#

Can you create a coherent, synthetic whole for a degree programme if students can take courses elsewhere that don't fit the narrative of the target institution? It takes away the "character" of a degree programme, IMO, and makes it into a pick-and-choose menu of potentially incongruous modules.

Read as: "universities must worsen working and long-term living conditions for the people who work there. It is not acceptable for these people to have a comfortable old age retirement."

I was laughing the other day at Radio 3 over lunch. The pianist said "I'm aware this is a lunchtime concert, so I wanted to play something digestible." He then launched into twenty minutes of tuneless, abstract avant garde piano bashing.

MSU's leader has strong words: "Michigan State will never abandon our core values. As a proudly public institution, that means extending opportunity to people of all backgrounds and opening our understanding to their lived experiences." Hope he lives up to defending those values.

"Benefits" is such a horribly loaded political term that makes it sound like you get a bonus for being disabled or unemployed. I much prefer the, of course also ideological, term "welfare". A better narrative.

Appalling. It's nobody else's business what you do to protect yourself. This just shows an embarrassing and thoughtless weakness on the part of the asker. As for the racism...

I've been reading and writing more about George Orwell and atomic bombs this morning. But best was revisiting ‘Politics and the English Language’, in The Collected Essays, Journalism and Letters of George Orwell (Secker & Warburg, 1968), IV: In Front of Your Nose 1945-1950, pp. 127–39

So many serious points about language and thought -- and their interrelation. But I couldn't help but smile as I thought that I must fall into many of the lazy language traps about which Orwell writes. It is so hard not to. I imagine him tearing apart my prose.

It is curious, though, that he says that true thinking when writing is to visualise the metaphor. If you don't have a "mental image" then, for Orwell, you are "not really thinking". I never have such "mental images". Am I never really thinking? Or do people just think differently.

I mean, I try very hard to _consider_ the metaphors I use. But is a "mental image" required for thought?

Urgh. I seem to have broken my foot *again*, just from walking. My bones are so soft, from steroid medication, that I break them so easily. Thought it was just rheumatoid pain for weeks but now convinced it's a fracture. On with the boot!

My foot in a black restraining boot for fractures

Example of what I mean. These are major medical advances, linked to a vaccination technology, being flushed away. Sickening.

With grim news about anti-vaccination sentiment in the US government, pleased to say that, over here, I've booked my Covid Spring booster jab. Just bonkers how much damage they're doing to medical advances with this clown (RFK?) running and ruining things.

Just abysmal. An organisation that won't enforce its own code of conduct has no integrity. A scientific society without integrity has no worth.

We're going away, in the summer, for 5 days. Obviously, I've had to find remote haemodialysis. But the in-centre sessions are only every other day and 3hrs. Far less than the 8hrs I do 5 times per week at home. So, today, I'm practicing fluid and potassium restriction. Craving tea already at 9am.

Keeping fluid buildup levels down, as well as potassium levels down, with this low, but sadly standard, level of haemodialysis is really hard. It's also crucial, as you risk a heart attack. It also makes you feel terrible. Anyway: practice mode here.

Really excited to have an Alison Friend artwork in the post. Not an original, a print, but still lovely. I love her work!

This is called "Found a Friend".

A portrait called "Found a Friend" by Alison Friend. One large brown and white dog is being hugged by a smaller white and black dog. They are both scraggly looking with comic facial expressions.

@resprofnews.bsky.social hey - I've set my preferences for email/lists to include the 8am playbook, but it doesn't seem to come through (last week for example). Any advice please?

Rheumatoid arthritis flare continues to cause me serious challenges. Can no longer walk the dogs or go any distance. (Don't worry, Mrs Eve is handling the dogs.) Not quite needing the wheelchair again, but it's very frustrating and pain levels are terrible. Wish we could accelerate move to new meds.

I have a doc who wants to prescribe me the new drug, "Sipavibart", that reduces Covid risk in immunocompromised people by about 40%.

The problem is, it costs £5,000. 😬 Would any generous donor please like to come forward?! 🙏🙏🙏

I could try crowdfunding it, I guess, but it feels too selfish.

Needless to say, it's not on the NHS (yet?!) and they may not ever make it so. Would totally improve my life though.

I read a piece yesterday, I think on the Society of Authors site, about how there might be "too many books" because "they can't all succeed".

They don't all need to "succeed". We can have some lesser read books without a problem. Why does "success" mean widely shared readership, anyway?

Had a very frustrating technical day. Beware upcoming geek speak.

We've got an ECS task definition that is spinning up an EC2 instance, which works. But the EC2 instance never registers itself with the cluster or task. Permissions look right. Nothing suspect in ECS log.

Baffling for now.

This morning's pre-tech work: proofing a book chapter on digital piracy; writing a blog post on academic piracy secondary literature; and polishing the George Orwell book chapter.

It's very good to see this. It was bonkers to exclude household contacts of ultra-vulnerable people from vaccination.

Blimey. Doctors have approved me for upadacitinib. Applying for local authority funding now. It can't come soon enough.

Greatly enjoying listen to Prof Joe Brooker speak about translations of French symbolist poetry while writing CD/CD docker deployment scripts for the new KC Profiles system.

Now moving on to read @ellygriffiths.bsky.social's The Frozen People. Time travelling crime fiction from what I gather!

The cover of The Frozen People by Elly Griffith with the title text above a foggy London landscape with Big Ben visible. The text blurb at the bottom says "Some murders can't be solved in a lifetime"

Tricky hospital appointment #2. So, I spoke with rheumatology (3 hours late) and a very helpful doctor. That said, it's never someone who knows my case, and she spent ages going through my history, gasping at each terrible outcome along the way and noting that I am "complex".

I told her that, essentially, the arthritis is very badly controlled, very debilitating, and that I really need to do something. I.e. I am always in pain and even basic walking is difficult, if, at least, possible.

I told her of my discussions with renal, in whose view I have nothing left to lose, kidney-function-wise. So I said, if we are holding back on drugs because they might damage my kidneys, then that ship has sailed and we might as well just give them.

She tried to discuss this with the consultant. But, he'd gone home.

Anyway, she thought that I could try an agent similar to baricitinib (same class of drugs as the ones that caused me to get the kidney virus: JAK inhibitors) called upadacitinib. She is going to discuss with the team and phone me back on Friday.

A potential result! Please let it work!

Tricky hospital call #1. I spoke with haemophilia. There's one more blood test they want to run. She thinks there is a clotting problem in the vasculature, rather than the blood itself. (The blood clots just fine in the dialysis circuit if we don't administer heparin.)

We discussed the situation and I reiterated that I am happy using the central line at the moment, but that I would like to be able to use the fistula as a backup when/if it fails. She has suggested 2 drugs that could be given before dialysis to change the vascular apparatus's clotting process.

Final post then on to work, but my wife is seriously annoyed at the school behind our house today. They've started to play loud pop music outside, in a dense residential area, during recreation. It's deeply antisocial and they never used to do it. Complaints met with "the children like it".

Seems a small matter, but it's very disruptive and the bass/kick drum really carries. Thinking of blasting some music back at them when they're trying to teach. Just kidding, I'm not that petty.

Definitely "first world problem" etc, but also frustrating.

Today, I think that my current Knowledge Commons project will reach 100% test coverage. I'll also write about our forthcoming infrastructure plans for digital preservation. All fun!

Today I have two tricky hospital phone calls with hard conversations.

The first is haemophilia. I can't stop bleeding, so we can't use my surgically created fistula for dialysis. It bleeds - shooting blood - for over an hour when we do. This isn't safe. But blood tests reveal nothing.

It seems as though I'll have to use the central line in my chest forever, which is an infection risk.

Second hospital appointment is rheumatology. This is tricky because my current meds are NOT working. Walking is very difficult and painful. Pain is referring to the muscular systems.

My neck and back are burning with pain.

But there are virtually no options. Baricitinib, the drug that let BK virus destroy my kidneys, is "not recommended" for renal failure patients. But I have no kidney function left to lose. This drug works SO WELL for my arthritis.

But will I persuade them to give me a drug in a "not recommended" situation? I can't have Rituximab again as it caused permanent b cell depletion. Adalimumab seemed not to work. Cyclophosphamide was hideous. I'm out of options and it's, as I say, "tricky".

The only disability funds I've ever had are related to home dialysis (eg water bill rebate & council tax reduction as a room is dedicated to dialysis), but I feel so strongly about these cuts for others. Please, please read @francesryan.bsky.social's book to understand disability poverty in the UK.

I've had rheumatoid arthritis since age 20. Sometimes, I've been able to dance! But, at times, I've needed a wheelchair. Sometimes I couldn't use my hands. I have had a stroke and sepsis. I have terminal kidney failure now.

I have never qualified for PIP, which they are making harder to claim.

How hard is it to get PIP benefits?

If you have inflammatory arthritis and can walk 50m with help, but not 200m, you get nothing.

Being only able to walk under 200m with help isn't disabled "enough" for any support.

If you can't move 50m you can get just £28.70 per week help.

"cut for those judged as unfit for work (as incentive to seek work)"

It's almost as if it doesn't make sense...

Spent the morning so far writing about George Orwell and atomic bombs as a commissioned book chapter. Shortly on to tech work, but I think I also need to re-read Rex Warner's /THE AERODROME/ for comparison. I remember thinking it great, but not much else.

Today is a busy day. Just finished dialysis and will start with some writing and a dog walk. Then it's some programming but will jam in a haircut. I'm also planning to read some of my book on Tor, which is brilliant, before we head out to a candlelit church to hear some William Byrd motets.

Some NHS IT systems are like the 1990s called. "This website is not compatible with your browser".

IT'S FIREFOX. IT'S 2025.

These are the people who supposedly are responsible for managing the reputation and "optics" of institutions. With this kind of behaviour. It's appalling.

On updating principles:

POSI has already been updated more often than most POSI adopters have updated their POSI self-audits.

Those who don't want to see POSI adoption expand could start saying “it isn’t really clear what you are signing up to when you adopt POSI because it keeps changing.”

Hilarious in almost every way. The content is funny in itself; an NFT of the Mona Lisa. Then that it's paywalled when a member of the public wants to read it is tragically funny. Then that the password/DRM is bypassable JavaScript is just a joke!

Probably something that most people don't know about kidney failure: dialysis not only cleans your blood, but takes fluid off the body. When your kidneys fail, you no longer urinate. But removing fluid in a short period is tough on the body. It's like packing a week of removal into a few hours.

And, of course, this means you cannot drink a huge amount when you have kidney failure. Particularly difficult in the summer when it's hot, but you can be gasping thirsty, but mustn't drink as fluid overload causes heart attacks.

Urgh. My blood pressure dropped severely on dialysis last night. This was my own fault: I tried to take off too much fluid. But when it hit 85/47 I had seriously bad cramps. Had to do an agonising early disconnect at 5am.

OK, odd question as I don't have a baby, but can anyone recommend an audio only baby monitor with adjustable sensitivity?

Having someone to stay overnight so I can dialyse safely, but need my helper to hear the machine alarms if I am unconscious.

Urgh. Some less positive things. I have my first non-Covid infection since 2020. Just because I went to see my nieces? Was outside the whole time. Ridiculous.

And my awful troll has returned. 12 years of resent-filled hateful posting. Block block block.

An exciting day, kicking off with research, followed by some serious programming and unit test writing.

But perhaps the highlight is the conversation I'll have with @ernestopriego.com for his Design Justice course about social justice and open scholarly practices.

Hopefully we can record it.

Described our dogs to my brother last weekend. "Luka's terrified of me and I have to be so gentle and patient with him. Also, Robyn is really shy of people she doesn't know and has 3 legs."

Him: "you didn't pick very sociable dogs, did you?"

Me: "no, we chose the ones that most needed rescuing."

They're both lovely. But rescuing dogs isn't just about you. It's about the dog and giving it a home. It's why I don't like the show The Doghouse sometimes. They make so much of whether the people and the dog form an instant bond. But it can take 18 months for that to develop. Not 18 minutes.

I'm afraid I watch Crufts just so I can look at all the lovely dogs, but I find the whole breed conformance thing a seriously weird idea. I don't understand pursuing a hobby that is essentially "is my dog well inbred".

I think they should just have a "good doggo" competition instead. Like Robyn.

One of my dogs, Robyn. She's got a light brown head with a black and brown body. Folded over ears and an alsatian-esque snout.

It's a cliché, but isn't it funny how "making tough decisions" in government always involves hurting people who are in no state to fight back, rather than those who would feel no pain through being taxed?

Last week I reread _Nineteen Eighty-Four_ for the first time since I was a teenager. It really is a spectacularly chilling novel. It's easy to think it's clichéd and you remember it all, but it's actually a truly rewarding text of multiple genres.

Now I will write a chapter about the a-bomb in it.

Away visiting my mother, brother, and nieces. And, of course, my mum's dog, Skye, who has gone bonkers ever since I arrived!

A large munsterlander dog with a black face and a black and white body. She's lying on a rug next to a table.

The essential act of war is destruction... of the products of human labour ... A Floating Fortress, for example, has locked up in it the labour that would build several hundred cargo-ships. Ultimately it is scrapped as obsolete, never having brought any material benefit to anybody. Orwell, 1984.

As I've been writing tests and CI pipelines this week, I've been thinking about software architecture. Test driven development sounds great in practice, but the actual truth is that tests have to account for specific implementation details. It's not just test input produces output.

Instead, you have to mock functions, simulate behaviours, anticipate errors, introduce errors etc. It's very hard to write good, fully working unit tests before you know the details of the implementation.

I've just got our CI pipeline on the new Knowledge Commons Profiles system to pass 100% linting in ruff and djlint. Next is to get test coverage up!

All part of productionising software.

This morning's "research" time is given over to a peer review. And another request has landed in my inbox. It does make me think that queries about the sustainability of the PR system, in an era of such increased publication output volume, have some merit.

An interesting medical day at hospital.

First, wow am I anaemic. I've now had IV iron and they've upped my EPO hormone dose to produce more haemoglobin.

Second, it seems I can revert to the much stronger treatment for my rheumatoid arthritis, because I have no kidney function left to save.

We'd been holding off to leave the last portions of this intact, but the doctor today said I basically have none left and I am totally, 100% reliant on dialysis to live. So who cares if an RA drug damages kidneys? This doesn't apply to me anymore.

I need to better control my potassium levels as they are spiking between dialysis sessions and risk heart attacks. No more Pringles. Drat.

But I am also losing loads of weight due to the pureed food diet and small meals. Not ideal and I now have to consume disgusting supplement drinks every day.

So many ups and downs, but I am so grateful to be able to dialyse overnight, 5 days per week. The health benefits are enormous and it's so great to have my days back.

I still don't have a concrete hold on life expectancy, but I'm doing my utmost to maximise it and to enjoy my time.

A tube of salt and vinegar Pringles

Sigh. If you are really wealthy, you can now get Sipivibart ("Evusheld 2" - a Covid prophylactic) - on an unlicensed and imported basis for £6,000. I don't have that sitting around.

NICE won't get this approved for those on the NHS until some time in 2026, if at all.

Today, I am wrestling with containerisation of my new Profiles app for Knowledge Commons.

Docker is such a great idea in principle. But it's always complicated to build a totally replicable environment that you can just ship to production anywhere.

Urgh. My potassium levels are bouncing up to 6mmol/L on the 2 days per week when I don't do dialysis. This is dangerous and my nurse will tell me off. Need to change my diet further and start taking potassium binders.

Tomorrow at 1pm, UK time, I'll be speaking about the economics and socialisation of open access books. May even wear a suit.

I'd forgotten that, in the opening chapter of _Nineteen Eighty-Four_, the characters go to the cinema to watch a film of refugees being bombed and drowning in the Mediterranean. They laugh and cheer. Appallingly prescient.

The cover of the Penguin paperback of Nineteen Eighty-Four. It is orange with the Penguin Books logo at the top. The title and author though are blocked out with black boxes to give the effect of censorship. At the bottom is a penguin.

Luka, one of our rescue dogs, is such a poor traumatised boy. He spent 8 years in a shelter because nobody wanted him. He is incredibly scared of men who live in the house due to past abuse. I have to be so patient & gentle with him. As we reach 2 years of having him, I'm slowly gaining his trust.

Luka, a large black dog with Labrador characteristics lying on a blue velvet sofa

Urgh. Struggling quite badly with my rheumatoid arthritis. As per my clinician's advice, I have reduced my steroids over the past week. This has caused the joints to flare and I now have extremely bad pain in my left shoulder, my lower spine, my left hip, my neck, and both knees.

"Remote access to social and cultural events has largely been revoked now non-disabled people no longer need it."

"clinically vulnerable people have been left with the “choice” of in effect shielding indefinitely or risking our lives each time we go out"

"It isn’t simply that the things that helped clinically vulnerable people to stay safe have gone – there’s pushback to the idea that we even deserve them. Simply wearing a mask ourselves in 2025 – let alone asking someone else to – is enough to get yelled at by a stranger in Tesco."

"As one district nurse told me last year when I asked if she would mind testing for Covid before she came to my home if I gave her a lateral flow test: “It isn’t for people like you to tell us what to do.”"

But waiting in a corridor on massive doses of pain relief wasn't the worst part of under-funding. They had *no spare dialysis capacity in ICU*. They couldn't dialyse me when I needed emergency care. And then my potassium went critical. This could have killed me. Almost just another statistic.

OK, I'm a terrible grinder it turns out. 5 days into the gumshield and I have *bitten through* it in multiple places. Oops.

Wow. The UK "railcard" website is truly terrible. Using my existing account, errors all over the place and can't complete checkout. Had to setup a new account. Verify email address doesn't work if you are logged in, so have to logout. Just a really bad experience.