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July 2022

*When* (not if) we succeed in this campaign for Evusheld I think I will write something about effective activism strategies in the digital age. Foremost, it still boils down to needing good people to work with. I am very lucky to have found @NikolaBrigden and @MarkOak04974342.

But it also requires a lot of hard graft. Writing letters, contacting media, coordinating charities, liaising with clinicians like @drlennardlee who are willing to stick their head above the parapet. It has been a second job orchestrating this potentially lifechanging campaign.

A day of important anniversaries. 25 years of Dig Your Own Hole. 30-something years of Orbital. Oh and 14 years of marriage...

Today was interesting on the Evusheld front (and the weekend is going to be even more so). NICE appears to have launched a scoping consultation, ref ID6316 - the next step in the approval process. Should have started in March, but better late than never.

The first Leftfield track I ever heard was, like most people, Phat Planet. Relentless and forever associated with the Guinness horses in the sea. https://www.youtube.com/watch?v=5GC_X_tI5kA

I ended up becoming obsessed with their back catalogue. Release the Pressure off Leftism was a lovely slice of dub electronica with fantastic vocals https://www.youtube.com/watch?v=zBfs0mPiO3M

Inspection: Check One was another that stuck with me for years. https://www.youtube.com/watch?v=P7FXF7aTZc0

Can someone please explain why energy prices are rocketing and why now? It's said that demand is soaring or there's a scarcity, but it's not as though the lights are going out. Most articles are circular and say 'energy prices are rising because the cost of energy is rising'.

This seems to predate the Ukraine war and I can't see why covid would cause a change in energy demand. Energy companies seem to be making billions on the wholesale market. But why are they raising prices for this absurd profit only now?

Certainly, there has NOT been a worldwide 300% increase in demand, surely?

Writing about the history of MS Word file formats today and am amused by the hex header D0CF11E0A1B11AE1 in the older .doc format, with the human-readable pun on "DOCFILE".

Also amusing is the spec document for reading older .doc files. The whole thing reads like this:

"For this reason, the Plcfbkfd that begins at offset fcPlcfBkfFactoid, and the Plcfbkld that begins at offset fcPlcfBklFactoid, MUST contain the same number of data elements."

Don't think Toby will make it into tonight's broadcast as he was sleeping throughout the filming, but here he is looking very handsome anyway

So @Specsavers refused to make the reasonable disability adjustment of asking the optician to take a covid test. Surely a gross violation of the requirement of the Standards of Practice for Optometrists to "ensure a safe environment for your patients".

The code states that "the care, well-being and safety of patients must always be your first concern". I specifically told @Specsavers that I have a disability and am immunocompromised. They seem not to mind re the "responsibility to ensure the care and safety of your patients".

We finally found a travelling optician who takes a test every day and wears a high-grade mask. But another instance of organizations not making adjustments for vulnerable people.

Throwback to a few years ago. Best comment on this picture was: "all the best 303 patterns sound like a pet just randomly walked over the buttons."

A resolutely fair balance of masked and unmasked people in "The Undeclared War", perfectly showing how we can live with each other, regardless of our viral transmission preferences.

Offscreen: the vulnerable and immunocompromised dying.

National television news are coming to my garden tomorrow to interview me re. vulnerable people still shielding and the drug - Evusheld - that could help free us. I'm really used to public speaking, but I'm now feeling nervous!

Back from leave and I've gone from several hundred emails down to 11, although it's taken me all morning. I wonder whether batching them takes less time than daily checks. Probably, but makes me question the ethics of relying on other people to resolve things without me.

In other words: you can save yourself time on email by not replying, but it will usually be at someone else's expense.

This week as part of our @evusheld4theuk campaign we're tweeting about #evusheld4mentalhealth. Immunocompromised people have been isolating for 2.5 years now. If you can remember what lockdown was like, imagine that it never ended. That's what life is for most of our members.

Nothing has changed this week. The UK remains the outlier, not providing the prophylactic drug Evusheld to its vulnerable population. 26 other countries are. Up to 500k people still shielding.

Finished final checking work on Chapter Four of /Paper Thin/ this evening. This chapter moves from the history of Unicode, through the development of DNS "decentralization", and on to blockchain (urgh) to think about the governance struct that underpin digital text transmission.

At 112,460 words so far...

As followers will know, I often tweet about my health challenges. This isn't (usually) because I want sympathy. It's more because it is generally cathartic to share. I also want, though, to normalise and legitimate speaking about illness and disability.

Six years ago, as you may know, my autoimmune conditions led to a serious cerebro-vascular accident (CVA; a stroke). The damage, after the initial recovery, proved primarily to my hearing. The good news is that in the past 2.5 years of isolation this has improved somewhat!

That could be, though, because I do not find myself in crowded environments where I struggle to discern noise from speech. But at home, in day to day life, I don't need my hearing aids. My wife probably would say I *should* wear them more when she is speaking to me...

The slightly less good news is that there were also signs of ocular inflammation at that point that I was told could clear up or could become progressively worse. My eyesight in my right eye appears, at present, to be degrading quite rapidly.

Hospital are going to check on this soon. It's lucky I have another functioning eye anyway. But all these things caused by rheumatoid arthritis and vasculitis that 20-year-old me never suspected would come my way before age 40.

Today I finally met my niece for the first time in person. It's taken my family so much planning to make it safe. Sick of this pandemic world where it's so hard to see the people I love without massive risk. Still, the UK is among the only countries not providing Evusheld.

Mmm. Cheers!

I do wish that Google/Android didn't say "this contact will be moved to the bin" when you remove an entry. Had to delete two sadly deceased friends and relatives and it felt poignant... Until I was told I was "binning" them.

Shows that you need care in these systems around the language of metadata. For users, the metadata record also refers to the subject of the record, not just the record itself.

Started watching "The Undeclared War" as part of our Mark Rylance-fest. I hope his presence is going to make up for some of the ComSec BS they've spouted already.

Some very dodgy flashy nmap terminals, some sketchy metaphors for cracking, and some people asking leading questions that anybody skilled in this never would on behalf of a clueless audience.

Ultimately, Mrs Eve's critique so far is accurate: we've seen a lot of people tapping away at computers, which is boring. And no Mark Rylance.

We also watched The Phantom of the Open, another great Mark Rylance performance. Both hilarious and empathetic.

My mother is staying, having isolated, and we went for a woodland walk. Extremely refreshing and head clearing to get out.

A trifle sad to have this particular copy of CLOSE READING WITH COMPUTERS returned to me - the copy owned by the dedicatee, my grandmother, who died earlier this year.

Today's book work turns to the sequential development of Unicode and the geopolitical challenges in incrementally developing a "universal" standard for digital textual representation.

Who do you alienate/marginalize when you pick your starting point? Do you work on just the most widely used characters in the Latin codeset? But what about areas where the Cyrillic-Latin divide has political implications?

The reasons *why* any particular alphabet, such as Latin script, is widespread (and so may enjoy early digital adoption) are rooted in longstanding cultural histories and are embedded in political situations.

The good news is that the boot has come off the broken foot today! I'm ultra nervous about treading on it too hard given that it broke just on a normal step but, given the impending heatwave, this is welcome.

A friend does incredible pet portraits. I don't know how you can draw like this. Just totally beyond me!

Still love the drawing she did of Toby. Totally captures his expression. She takes commissions if anyone is interested.

Just awoke from a terrible nightmare where I was fired from the train company for which I worked because I alerted my superior to a severe network security flaw that allowed remote train control.

It turned into an entire night of nightmares, featuring covid and needing a ventilator. This was worse than the remote train driving one.

I was surprised to learn that Morcheeba's albums never had top 5 chart success. Just seems surprising given that many people I know would so obviously recognise their music.

In other news, we have no water supply here. Good job there isn't the worst heatwave in the history of the country en route.

The Met Office: "this heat could kill older people. You should take precautions like drinking more and staying out of the sun."

Tory MP: "Snowflakes! Cowards! Face your deaths like true Britons!"

Imagine thinking that "wearing sunscreen" is "everything that's wrong with contemporary Britain"

I'm taking a holiday!

Of course, I'm not going anywhere as we're still shielding.

But my mother has isolated for 10 days and is visiting. I'm going to see my nieces outdoors. I'm going to take some time for writing and reading, which I still love. Afraid I won't be on email...

Interesting. Another "how much does a monograph cost" study. "Of the 382 titles studied, fewer than 5% had full costs lower than $20,000 and the least costly book studied came in with full costs of $15,140." https://hcommons.org/deposits/item/hc:47235/

Of course, businesses run with very different cost structures end up with very different figures for these. I'm reminded of @rupertgatti's series: https://blogs.openbookpublishers.com/introducing-some-data-to-the-open-access-debate-obps-business-model-part-one/

I do love Research* Playbook.

"This will be news to anyone who lived through Donelan’s career as universities minister, when she used to tell us that not being in education was probably for the best for other people’s children"

As I hit the final week of the immobility boot with the broken foot, I'm now left in an awkward situation. I should get some bone strengthening drugs in hospital at some point, but until then worried just about basic things like standing up, which is how I broke it last time.

I have oral alendronic acid but it's clearly not doing enough. I really feel I have enough other things to worry about beyond breaking my feet every time I get up 🤦

That's where I'll stop on this today. It's hard to get on with life, literary studies, and leisure when people with my conditions remain so trapped. Everything I do continues to be restricted by Covid. I am grateful to everyone, on here and IRL, who is supporting me through this.

Penultimate tweet on this today. The extent to which Covid continues to restrict the immunocompromised can seem "paranoid" from a healthy perspective. But imagine if you had a 1/4 chance of dying from the virus. It would still not be paranoia if the risks were much, much lower.

The risk *is* now lower. But it's not lower than most people would be willing to hazard if it were a game of Russian roulette.

A reminder of *why* we are campaigning for this drug, Evusheld, in the UK. We thought at one point, after five doses, that I might have responded to the vaccines. But a clinical trial in which I participated noted: "you have not made a measurable antibody response".

Yes, I may have some t-cell response. Immunity is very complicated and interlinked. But it's not encouraging. We need whatever boost protection we can get.

I know there's no point seeking integrity from our Gov, but the whole "he must resign because he's lost the confidence of the Con Party" while Con MPs wouldn't actually vote for "no-confidence" in him is totally ridiculous.

Perhaps the most frustrating thing I'm experiencing right now is seeing *26* other countries protecting people with my condition using Evusheld, while the UK government refuses to do so. You can't even buy it privately here. What do we know that they don't? @evusheld4theuk

Really brilliant seeing our group member @ShannonB on Channel 5 News just now, representing immunocompromised people. She was also joined by @drlennardlee who is our leading clinical advocate. So grateful to everyone who is spreading the word about this cause.

Evusheld for the vulnerable is held to a higher standard than other Covid therapies and we don't know why. The UK Government keeps delaying then, when new variants arise, demands new tests. You can use procurement clauses to protect against future inefficacy. @evusheld4theuk

One day I will shut up about this. But not today. A huge number of people - equivalent to whole cities in scale - are still shielding in isolation. The UK government hasn't purchased the monoclonal antibody therapy, Evusheld, authorised for this group in March. @evusheld4theuk

Today I handled my inbox, did some (I think!) good work on my book, then spent all afternoon meeting with @openlibhums colleagues, led by @the_blochian, to discuss what we stand for and what we will do next.

Is it worth watching beyond S1 of Stranger things? I enjoyed the first season but am worried it's going to to off the rails/get lost...

Most polarising question I've ever asked on Twitter, it seems

Did a bit more work this evening on the history of unicode control codes and the development of electric typewriters, with playback.

This week our @evusheld4theuk campaign focuses on #Evusheld4Families. I have seen my newborn nieces only twice since they were born. To meet, everyone must isolate for days.

Others in our group have their immunocompromised loved ones living in outdoor sheds for protection.

Tennis commentary just brings out the total sarcasm in me. "Everybody here today is ready for this". Oh really? Everybody who has gone to watch a tennis match is ready for it? Amazing.

"You play against the ball. You chase the ball down. It doesn't matter who's at the other end.

To some extent."

Did some music this morning and had a confusing and worrying 15 mins where I couldn't get the Minitaur to start. Turns out it helps if you use the right power cable. Then anxious I'd blown something up inside it! All happy again now though.

Such a relief... my dentist has replied apologising unreservedly re. the fiasco this week and promising to test + wear a solid mask. Hopefully the receptionist gets a bollocking so this doesn't happen to anyone else.

It's hard to achieve global equity of access to authorship when access to reading is restricted. I've had to bounce back pieces this week to authors outside the Global North saying "if you don't cite this book, the peer reviewers will rip you apart".

The replies are usually, "I will try, but my library can't afford this academic book and I can't afford it personally". So while we're doing lots to try to decolonise our curricula everywhere, we keep imposing access structures that reinforce those historical global patterns.

What are the radical options: change what we demand of citations practices? Seems that would have problematic epistemic consequences. That said, "citational justice" projects advocate for just that.

Do more to make scholarship accessible? I, of course, like this option. But it also has to be bidirectional. If it's just a knowledge export from the Global North to Global South, that doesn't fix any of the domineering legacies of empire.

Still, I did some enjoyable work on unicode blank spaces for my book, Paper Thin, this evening. Would have been good to have been able to present it then go to the pub with colleagues/friends. But hey. What a world.

Have memories of previous years at What Happens Now conferences and the last English: Shared Futures event. Feels pretty miserable not to be able to attend these.

Honestly. "I want to remain *Prime Minister* so I can have a wedding party in a posh house in a month's time" is just... I really can't believe it. Beyond disgusting.

Also great and just mounted: a stained-glass effect treescape by one of our best friends, Caroline Matthews. We also have many of her pictures around the house.

Picture mounting on the walls this evening. Lovely illustrations by Chris Dunn, our favourite artist. Our house is bedecked with his animals.

I thought we were told that "leave means leave"?

Wish we could just "get Boris done".

Using that shortening just for the Br*xit slogan pun. Though, disclaimer: anybody who calls him "Boris" unironically is just playing into his personality cult [sic].

Quietly forgotten: the totally inaccurate predictions of "super forecaster" Dominic C*mmings that the PM would have been gone by the spring.

Research* Playbook gets to the heart of the problem with this soap opera sideshow. Important issues go unreported but also unacted upon. Our campaign for Evusheld - so close to success - now nobody's priority again.

Supposed to have a dental appointment tomorrow. Waited 6 months for it. Explained that I was immunocompromised and asked if the hygienist would please do a test before seeing me. They refused to ask. Told me I could test after visiting to see if I got the virus that could kill me

This is the reality of disability discrimination in access to healthcare right now. Won't even ask healthcare professionals to protect vulnerable patients.

Their advertising line: "Visit a dentist that has both the expertise and empathy to make your needs - and your family's - a priority".

What's frustrating is how the personality battles at the centre of government occlude actually important issues. Who's PM? Who's Chancellor? Trivial compared to the life and death matters these people decide. And every time there's a political scandal it displaces real news.

Has anywhere ever implemented a voting system based not on candidates but on policies? "Mark the policies you agree with" etc? How did it work out?

I suppose it's very susceptible still to spin.

It's remarkable how disbelieving people are when you reply to unsolicited WhatsApp messages saying "you've got the wrong number".

"Are you SURE you're not Kevin?"

Yeah. I'm pretty sure.

Possibly more good news for our campaign today. Response to Lord Mendelsohn by Lord Kamall.

"The Department and the National Health Service are identifying appropriate patient cohorts and approaches to the potential deployment of pre-exposure prophylaxis."

Some hope.

That said, this is frustrating. The patient cohorts have already been identified in the NHS England RAPID-C19. 2022. ‘Defining the Highest-Risk Clinical Subgroups upon Community Infection with SARS-CoV-2 When Considering the Use of Neutralising Monoclonal Antibodies’ 30 May 2022.

The other thing, of course, is that while #NotRiskingIt implies a choice, what is the choice if the risk is death? How many sweets in the bowl would it need, with one being poisoned, before you'd take a candy?

The thing is: I'm hacked off at losing my former life. But I'm so lucky compared to many in our group. People have literally had to sell their homes because workplaces wouldn't accommodate them. It's not even that they're #NotRiskingIt. They can't risk it. https://getevusheld.uk/4_patients.html

Today we're highlighting the restrictions on the immunocompromised; where lockdown never ended. Should I buy a coffee at the risk of hospitalization? Is a train journey worth dying for? I used to travel the world & go to gigs. But until there's @evusheld4theuk, I'm #NotRiskingIt.

A selection from a past life

We're not counting any chickens before they are hatched, but some hopeful reports coming out that Evusheld may be on the cusp of authorisation in the UK. If true, our patient group will work to ensure that it's available to everyone who needs it. https://www.dailymail.co.uk/health/article-10976341/amp/Will-Covid-drug-Evusheld-offered-vulnerable-Britons-dont-respond-vaccine.html?fbclid=IwAR2oabls3zkqPOx4NeeiVZKXwxz1xngI-fB2Emr_tiRqHGAQtCRHheZCOW4

We believe that everyone in the UK listed in the NHS England RAPID-C19 report ‘Defining the Highest-Risk Clinical Subgroups upon Community Infection with SARS-CoV-2 When Considering the Use of Neutralising Monoclonal Antibodies (NMABs) and Antiviral Drugs’ should receive Evusheld

Mmm. It's starting to work! Although there's still a lot of data refinement needed.

python3 -m build score-articles

‘The Transatlantic Mysteries of Paris: Chester Himes, Surrealism, and the Série noire’ is: 86.62% plain language, 2.59% jargon, and 0.08% bad OCR

Other categories include proper names, organziations, dates etc. that make up the residue percentage

Of course, the whole thing depends on the supporting definition of "jargon" in the article that will need to accompany it...

Checked 10,000 of my 68,000 plain language word dictionary today. This is quite straightforward. The final check is then of the 31,000 or so jargon terms.

The cryptic crossword we did today had a great circular set of interlocking anagrams.

23 Like some discs? There’s 30 ordered (7)
30 Turning 60, but involved with affairs now (7)
33 US Legislature has 23 thrown out (7)
60 Mine changed at 33 (4, 3)

23 OPTICAL
30 TOPICAL
33 CAPITOL
60 COAL PIT

Some pretty obvious stats on CEV people's views. Like "people who will die from a virus believe that people with the virus should not give it to them" and "people who will die from a virus believe the virus has had a negative effect on their lives".

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/coronavirusandclinicallyextremelyvulnerablepeopleinengland/4aprilto23april2022

Also: "those previously identified as clinically extremely vulnerable" = The Artist Formerly Known as CEV

A deliberate rhetorical gesture attempting to signal that the threat is over. But there are individuals, particularly those on Rituximab, who continue to have poor outcomes even after vaccination and are still at risk.

Which is probably why 6 in 10 people in this category either felt government advice was insufficient to keep them safe or they did not know whether it was.

Probably also why 13% of people in this category continue to shield (which, given the category is broad and includes those with just mild immunosuppression through to those on specific treatments with terrible outcomes, like Ritximab, makes sense).

We did a lot this week in the patient campaign for Evusheld (a prophylactic anti-covid agent for those who don't respond to vaccines) in the UK.

There has been a change in response from Lord Kamall indicating that a decision is being made. A response to Lord Alton read “Ministers recently received clinical advice on Evusheld for pre-exposure prophylaxis and are carefully reviewing this.”.

We had direct contact with 20+ charities, attempting to build a broad and unified coalition. Everyone we have spoken to has been on board with the intention to present a coordinated, united message.

We continue to collaborate with clinical and medical professionals to garner consensus around the benefits of Evusheld.

We have had calls with several MPs and their research offices to put pressure on the central government to authorise the purchase of Evusheld.

We ran our #BehindTheMask campaign on Twitter, showcasing the variety of people who are still shielding and need Evusheld.

We had a media article in the Daily Express with support from Blood Cancer UK.

We have started work, thanks to the generosity of one of our members, on producing an infographic about Evusheld, its costs, and benefits.

We have had almost daily questions in House of Commons and Lords about the availability of Evusheld.

We added a psychological support article to the website to try to help members to navigate the isolation and anxiety of shielding.

We updated the list of research articles on the website to include the most recent meta-study.

The group has reached nearly 900 members on Facebook and 1,100 Twitter followers! @evusheld4theuk

I finally finished Jennifer Egan's The Candy House. It didn't, for me, add up to more than the sum of its parts, but I still really like Black Box. The integration with the email chapter worked well. Tomorrow, I'm starting The End of Vandalism, about which I've heard good things.

The other day, just sitting at my desk working, I had a very sudden and acute pang of thanatophobia. It was an extremely pronounced, intrusive, and deeply troubling abrupt incursion of mortality salience.

It only lasted, say, 20 seconds but it was unsettling to say the least.

I can add more to this now. It was not a fear of being dead or having passed. Not any worry about the value of life in the face of its loss. The terror/fear was at the *process* of dying and how bad this might be. The bit before the end.

Thanks to Covid shielding I still can't go anywhere on my days off, so what shall I do with annual leave? Planning to read a novel in the garden, write some of my book, make some music, and do some hobbyist computer programming.

Managed an early morning isolated beach visit 😀

Stumping on the shore with my broken foot 😂