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May 2023

Damnit. I was all lined up to participate in the Evusheld 2 trial. Meet all the criteria, except... you have to live within 50 miles of test centre for home visits if you get Covid.

They asked if I could travel within the radius if I got ill and I thought about proposing a hotel. However, I would not feel morally comfortable with putting others at risk by being anywhere public if I had Covid.

Sigh. Was really hoping to participate in this.

I guess I'll get used to it and stop moaning - as I have had to with pandemic isolation - but my colleagues are off to Spain for an amazing sounding "away week". I'll be here having fistula surgery and dialysis. Fun.

Gotta keep remembering: I'm fortunate to have access to this medical treatment. Just would have rather been on the beach in Spain.

Very sad to hear of the death of Emily Morgan. A great journalist who went out of her way to cover the plight of the vulnerable in the pandemic, using her position for good. She got me an interview on national television and drew attention to our campaign. https://www.bbc.co.uk/news/uk-65735658

It's always "sadly, with regret, we have to be prepared for lots of you to die".

But I'd prefer not to.

Observations from week 1 of haemodialysis. It gives me an awful headache. I had muscle cramps today, which weren't nice. But my blood pressure is already now back under control, having been bonkers high for months. The day after a session, I seem to feel really good.

Feeling pretty gutted. All my music friends are off to a sunny farm in Devon for a weekend rave. I've gone into my music studio instead as I have dialysis tonight. Might as well make something they can dance to in the future, I guess.

Today, I complete my 37th trip around the sun. A day of bleeps and bloops on this present! And then: dialysis at the hospital.

Wikipedia can be amazing at revealing the intelligence levels of its subjects.

"Prior to their marriage, Rhodes accidentally shot himself in the face with a .22 hand gun after dropping it, leaving him using a prosthetic eyeball."

The questions the bloke who rammed Downing Street should ask are: can the civil service arrange a private driving course for him, or can he put the fine on government expenses?

My favourite Tina Turner tracks are actually both written by Tony Joe White - Steamy Windows and Undercover Agent for the Blues. TT's versions of them are better than TJW's, though.

Sorry, Tony.

Reflections from the dialysis ward. It is upsetting that I require it. It is challenging to spend so long every week in hospital.

But: I am lucky to receive this treatment, without which I would die. Many people don't get this and they would be grateful to be in my position.

The Prime Minister is again pursuing the "it's discrimination to judge rich people" line. 1 of course it isn't - he *chooses* to hoard more wealth than he can spend while eg disabled people live in poverty; 2 he uses this wealth to avoid using the public services he destroys.

In my view, it should be mandatory for politicians to use only public healthcare, public transport, and state schools. Suddenly, they'd improve.

First dialysis session really took it out of me yesterday. Exhausted today. Hopefully I'll get more used to this soon. And, of course, not every session will have the central line procedure.

The doctor and nurse fitting my central line amusingly insisted, given my Prof field, that if I swore during the procedure, it must be in Chaucerian "old English" [sic]. This was almost as good as the time I discussed Gravity's Rainbow with my in-procedure colonoscopist.

Day 1 of haemodialysis is done. Fitting the central line, which goes into your neck, then out of your chest, wasn't pleasant, but not too bad either. Back tomorrow for Day 2. Shattered now.

A day of writing unit tests today, which has been distractingly therapeutic. Signing off now for the evening to prepare for haemodialysis starting tomorrow morning.

Tbh, many people using the NHS don't want it to be entirely digital! Older people in particular might struggle with this.

Internal NHS record systems should all be connected and a digital system for that makes sense.

The rest is inventing solutions where there isn't a problem.

Tomorrow feels like the last day in a phase of my life. From Tuesday onwards, things will never be quite the same with the weekly immutable logistics of dialysis.

But I suppose, also, it's the first day of a new stage of my life. Let's see what I can do with it.

Week 2 of the tocilizumab and it's definitely starting to work! The only problem is that it's on an ebb and flow course at the moment - good earlier in the weekly cycle and wearing off by the end. It is *amazing* though not to be in constant life-ruining agony 24/7.

This should even out as it accumulates in my system over time. So grateful for this treatment. Life seems possible again.

I love decoding medical language. A letter reports that I am "neurologically intact", which was good to hear!

So, now confirmed: dialysis for me will be Mon, Wed, and Fri at 5.30pm. Each session is 4 hours in hospital. The central line to administer this will be put in on Tuesday morning next week.

If you miss a dialysis session, the hospital send the police to your house to check that you are OK.

Presumably, in the current Met police culture, they might start doing this before I've missed the appointment 😂 #precrime

I also think - barely daring to say this - that the tocilizumab is starting to work. My cardiac stress overnight - measured by heart rate variability - has been appalling for months (left graph). Last night, for the first time (right graph), it was so much improved. Pain better!

Being told that I'm starting dialysis is actually a huge relief. I've been getting iller and iller, all the while being on high alert to go to the emergency department if things go wrong. A relief to know it will begin under calm, controlled conditions, not an emergency.

"Mr Musk criticised the hypocrisy of expecting service industry workers to go to work while others had the privilege of working from home."

I wasn't aware that the world's richest man was so invested in the unfairness of some people having privileges denied to others.

So, with any luck, I should be starting dialysis next week. 3 days per week in hospital, 4 hours per session. Starting with a "central line" to the chest veins via the neck 😬

Grateful to everyone in the NHS who has helped me - and to followers on here for many kindnesses.

Overheard some students on my way to the hospital talking about their use of AI. "I ask it to critically evaluate secondary sources I am thinking of citing". I don't know what work that "critically evaluate" is doing, but it sounds like they're using it as a summarisation engine.

Well, bad news so far today. There is now no way to save my kidneys. I'm in renal clinic tomorrow to begin transition to haemodialysis.

Bloody hell. They have accidentally over-radiated me and I now have to wait until 2pm for the technetium to decay.

Today I am off to nuclear medicine for a VQ scan of my lungs to check I do not have a pulmonary embolism.

Braverman. I know she's trolling, but urgh.

"Nobody should be blamed for things that happened before they were born. The defining feature of this country’s relationship with slavery is not that we practised it, but that we led the way in abolishing it."

So you can take credit for good things that happened before you were born in your country, but can't be blamed for the bad things?

What about the fact that the economic inequality legacies of that system are still felt in the inherited present?

And that's before you even question the historical truth of her statement. https://www.theguardian.com/commentisfree/2018/feb/11/lets-end-delusion-britain-abolished-slavery

A few notes on why I am so open about my health challenges on social media, written while horizontal and feeling quite appalling.

Anybody can become seriously ill at any time. I was extremely fit at age 19 when I first developed an autoimmune disease, rheumatoid arthritis.

For quite a while, I did well at this, thanks to strong medicines, especially in my university career. Despite having a stroke, multiple near-fatal infections, permanent immune damage, hearing and some sight loss, I pushed on.

It hit me out of the blue. And I spent quite a long time after the diagnosis not wanting to be defined by my illness. I wanted my own life and career - and I wanted, with some machismo, to beat the disease.

Because most people who develop a serious chronic condition have one uniting aspect in our society: fear. Fear of losing everything you have, materially, if you can't work. Fear of losing your partner if you have one, because you're not the same person you were before.

At some point, though, I realised how much of my life had been shaped by this disease. Soon, I will have had it for over half my lifetime - most of "me". I also realised that the small platform I have, with that previous success, puts me in a position to speak.

So I decided, a while back, that I will "overshare", to some degree, my health travails. Because it's cathartic for me, but it also helps other people feel less alone. I know because I often get emails from patients telling me so, or asking for advice/my experience.

Fear of the pain. Fear of hospitals. Fear of a society that stigmatises people with disabilities. Fear of being told you're a fake.

Reading about suffering is difficult precisely because you know that, there, but for the grace of God, go I, but I think it's important to normalise this and to build empathy. I think it's important for those of us with some security to talk of such things.

The other thing to note is that, when well controlled, my rheumatoid arthritis doesn't stop me doing much. When it isn't, I am practically bedridden, vomiting in pain, crying in agony. We have such a poor societal awareness of conditions that fluctuate like this.

This week is really "crunch time" on my health crisis. Today: huge meeting of clinicians for last-ditch kidney-save attempts; lung scan (maybe tomorrow). Tomorrow: second dose of new RA drugs. Wednesday: kidney clinic where we ask them to start dialysis.

I still can't breathe properly. But this might "just" be the rheumatoid arthritis attacking the lungs if it isn't a clot. The RA is going mad right now. Kept me up all night in serious pain.

With any luck, this is the nadir. If the RA drugs work and dialysis helps, I should start feeling better. Sure, life is never going to be the same again once I need dialysis, but it might be an improvement on this.

Meanwhile, kidney function has hit roughly 10% (EGfR 10), continuing the linear decline that started only a year ago. Whether this is the cause or not, I feel seriously unwell/nauseated, massive headache, dizzy. Blood pressure through the roof.

The thing that strikes me about disability welfare in the UK is how it contrasts with the Covid furlough payments. When able people were unable to work because of a virus, the state subsidy was based on their existing earnings to maintain their dignity and living standards.

When people become disabled, the state sets the level of payment they get to an incredibly low, punitive, absolute amount. You may not starve if you become disabled in the UK (though there's no guarantee) but you could still lose pretty much everything you ever had.

The people in the NHS are amazing. 20 clinicians met, a few months ago, and discussed just my case for an hour. They are doing this again on Monday to see if there are any last ditch ways to save my kidneys.

There may not be an answer, but they really are trying to save my life.

I know everyone is more interested in Eurovision, but by way of quick health update: I've spent all day being sick and struggling to breathe properly. Indeed, today has had very little to recommend it.

Why? Kidney failure? Rheumatoid arthritis inflaming digestive tract? Severe pain from the rheumatoid arthritis? Nausea from the painkillers? All of the above?

Thank you everyone for your kind words. Blood tests show a suspected clot in my lungs. However, I can't have the CT scan to confirm this... Because of kidney failure. So I need a different test at a different hospital, on Monday. I am on blood thinners until then.

Well, I went to A&E. They transferred me almost immediately to "resus", the intensive care area for emergencies. I'm on IV morphine and other fun drips. About to have lung x ray. Waiting on blood results. Have had ECG and chest ultrasound.

I woke up this morning struggling to breathe - felt like every breath wasn't enough - and my heart was beating all over the place irregularly. Apparently this is a common kidney failure symptom, but if it doesn't resolve shortly, I'd best go to A&E. 😕

And no one should endure an arrest because they are a peaceful protestor.

I object to how the arrest of this pro-Royalist attendee is implied to be worse than arresting protestors - as though arresting protestors is "more understandable" or they're not "innocent". https://x.com/BBCNewsnight/status/1656780208114999297

The media should object to this police overreach in all cases - not use it to slipperily justify the pre-criminalisation of protest.

Kidney failure feels like a slow motion car crash. You can see the wall ahead approaching. There's an airbag (dialysis), but it doesn't open until just before the crash. It's past the point where the brakes can help. All you can do is brace.

Very much enjoyed our ALPSP panel about digital preservation. There will be a video recording soon.

However, wow did that take it out of me. I used to do 2-3 talks per week. Exhausted after just today's with my current state of health.

Judy Russell makes a key point at this ALPSP webinar, to which I will return: it is very hard to know whether content is preserved.

This is a basic infrastructural requirement that we don't have.

Good email this morning from a reader: "I read your book and am inspired. Could you please recommend what I might read next?"

Bad email this morning from the hospital: "I recommend you contact the dialysis unit urgently today as your kidney function is very bad."

After bashing my head against a wall for much of the afternoon, I now have good validation on the XML for the new experimental deposit process at Crossref Labs.

1. XML is DTD validated when submitted against the new experimental schema with which you are working
2. XML is mutated back to 5.3.1 schema format and new fields are stashed in S3
3. Mutated XML is DTD validated against 5.3.1 schema and submitted to live synchronous deposit API

<record_diagnostic status="Success">

The *official* advice for people with conditions like mine is "to avoid contact with people who have symptoms of COVID-19".

But given this policy in schools and all other public spaces, it is impossible to follow this advice unless you shield.

https://www.gov.uk/government/publications/covid-19-guidance-for-people-whose-immune-system-means-they-are-at-higher-risk/covid-19-guidance-for-people-whose-immune-system-means-they-are-at-higher-risk https://x.com/TeeDixie/status/1655849751714095106

Tried to watch Colin from Accounts, but the first 20 minutes were about them critically injuring a dog and debating whether to give it medical care - and that's just not very funny.

Many people fear AI breakout, where the machine gains control and runs amok.

Without radical reconfiguration, I fear what a few big corporations can do, in terms of economic violence, to the world population, using AI.

Always love it in the OA publishing world when some dude rehashes the same straw man arguments that have been underway for a decade as though he's the first person ever to think them. #subtweet

Also, given that the people saying this are often the people hiring, it sounds like the mafia.

"Nice legs you got there. Shame if someone (us) had to break them."

My favourite is always: "but think of the early career researchers! How will they get jobs if they have to publish somewhere that isn't a press I recognise?!"

Tried _reading_ books, rather than just looking at the cover?

Sure, it's killing someone every three minutes. Yes, at current rates long covid is likely to be a mass-disabling event. We know there was evidence this week published linking covid to a massive surge in diabetes.

But we're downgrading the alert status.

Poor Luka was very scared by the coronation fireworks. He became agitated & dashed around the sitting room panting. He then came and sat right next to me and wanted reassurance.

There was one positive from this - he rates me slightly higher than "explosive mid-air ordnance". 😂

Been wondering why I've had annoying hiccups on and off for the last few weeks. Turns out this is common in kidney failure! The things you learn...

Whenever something new like this pops up on Twitter, I now just think: "uh oh. What's old crazy Elooon up to next?!"

Worth remembering next time some right-wing blowhard in British government talks about the importance of "free speech" and "cancel culture" that you will be arrested, in this country, for holding up a sign saying "Not My King".

Highlights of today's hospital trip:

* rheumatology doctor: "I read an article that cited you the other day"

* same doctor: "you are clearly very stoical - with inflammation like that I would expect a lot of pain"

* most important: we have a plan to treat

In November last year, I faced a "dilemma". The drugs that treat my rheumatoid arthritis let the BK virus that was destroying my kidney thrive. I had to choose between suffering intensely with no RA meds to save the kidneys, or losing all kidney function and being seriously ill.

I opted to try to save the kidneys and lasted until February without any biological meds. In Feb I was moved onto abatacept, which didn't work.

But the worst part is this: it also hasn't saved my kidneys. I thought it was either/or. It was and/both.

Tomorrow is further hospital treatment. Abatacept has failed, after 3 months, to control my rheumatoid arthritis, which continues to compress my spine and cause dire pain. I believe that we will next consider tocilizumab. This also takes 3-6 months to work.

Biological immunosuppressive therapies are the godsend of treatment for rheumatoid arthritis when they work (although the side effects can be very damaging). But each time it's half a year to see if it will work and, when every *minute* is agony, this feels like a lifetime.

Dratted kidney function is now down to 12% :/

(Well, technically eGFR is down to 12, which isn't _strictly_ a percent. But it's near enough.)

My colleague, Amanda, is now talking about the metadata contexts that can provide trust signals for the integrity of research work.

Wading in to the newish John Guillory book. Enjoying the discussion of déformation professionnelle. Reminds me of apocryphal tales of Morse code operators hearing language in birdsong.

Coming this Friday: tici taci Decade Vol. 01. Celebrating 10 years of the label. Some old classics remastered.