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August 2022

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Another day with more blood tests but no results yet. It's incredibly nerve racking waiting for these results given the potential implications.

"I feel strangely tired"

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Today's lunchtime listening break was David Holmes's latest: No One is Smarter than History. Quite an expensive purchase this as I also had to buy a 7" adapter for my player. Good production on this, but (sorry) didn't think it was anything special.

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On the US context, but it's the same in the UK.

As Americans ditch Covid measures, pandemic worsens for the vulnerable.

Older adults, immunocompromised and the very young are paying the price for the mask-less freedom of many.

https://www.theguardian.com/world/2022/aug/30/covid-pandemic-immunocompromised-old

“She was sobbing... ‘It’s so hard for me to see that people care so little about my life that wearing a mask is too much for them.’”

PRECISELY what I have felt for months. Governments have literally said that vulnerable people's lives are worth less than a piece of cloth.

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"Even as universities preach inclusion, conferences are increasingly in-person only. Removing the option to participate remotely will re-erect the barriers that have stopped individuals from different walks of life from participating in university life." https://www.timeshighereducation.com/opinion/conference-water-cooler-moments-are-not-accessible-everyone

Lots of elision in that quote there, but that's the sentiment.

Not saying this is an easy conversation: particularly if there are venue charges for the in-person component. Organizing such events is a huge task.

But I can't safely attend in-person events at all.

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A friend has long teased me by threatening to attend one of my talks and spoofingly ask "if Thomas Pynchon was an animal, what animal would he be?"

Thankfully, an academic book now appears to answer her question.

(The obvious answer, by the way, is "a preterite pig".)

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Open peer review and its rhythms

I was lucky enough, recently, to get a slightly-ahead-of-general-release opportunity to openly peer review Kathleen Fitzpatrick's most recent book manuscript, Leading Generously. It's over on HCommons for those who want to take a look and feed in.

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People in UK refused drug that could save their lives.

Thanks so much to our member Charles for baring his soul here. This article sets it out so bluntly and so well.

UK the *only* G7 country not to use this treatment.

#evushelddenied

https://www.walesonline.co.uk/news/health/people-uk-refused-drug-could-24878945

It makes me want to SCREAM every time I read statements that basically say: "the UK has decided the total opposite to 33 other countries".

Just WHAT do they think we know that they don't? We're asking for PARTIAL protection. Not 100%. Not forever. Just say a Christmas this year.

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Home from hospital and listening to Mouse on Mars's "Radical Connector" and the new Italo Brutalo album, "Heartware", while reading @kfitz's latest book. Certainly could be worse.

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Well, we're repeating the blood tests and then seeing what's needed. Likely an iron transfusion. If the kidney results are as bad as they first looked, then who knows?

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I got sucked into the stable diffusion fun.

A 1950s noir private investigator with a trilby and sunglasses in an office who is a robot

Meaner

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Ah yes, a nice relaxing bank holiday Monday, I thought.

Phone rings. Unknown number.

Me: that'll be the hospital.

The hospital: you've got a dangerously abnormal kidney function result and are seriously anemic and we need to see you.

Me: great.

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It's Tricky

The title of this post refers not to the classic 1987 single by Run-DMC but, instead, to the trickiness of rheumatoid arthritis and vasculitis as multisystem inflammatory disorders with a range of diverse outcomes.

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On the insistence of friends that it was a classic, I attempted to watch The Goonies the other day. First half an hour seemed to be a bunch of kids shouting atop each other incomprehensibly. Felt grouchy doing so, but gave up on it.

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Feels like hard going at times here, but working my way through this book MS... I've worked on it for so long that the earlier parts don't feel like "me" writing any more.

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Hmm. My broken foot has not healed well this time. It's been months now and it's still quite painful/delicate.

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Err, this photo that the BBC has chosen for quite a sensitive personal article about a celebrity seems somewhat ill chosen.,.

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A crossword clue that the UK government seems not to understand.

Enter true proverb? "A stitch... nine" in another form, right away! (10, 2, 6, 4, 4)

Prevention is better than cure. #Evusheld

It's a big anagram, without the "r" for those who care ("right away").

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Evusheld availability in Europe. Green is yes. Grey is undecided but not a no. Red is active denial to patients.

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Sat down with my synths for a 50 min jam session. Got to the point of adding blasting rave hoover noises, so probably not something I'm going to be happy with when I return 😂

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Excited to have page proofs in for my chapter in David Foster Wallace in Context, edited by @ClareHayesBrady

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Just had a youtube ad that started "one of the reasons that I love being a psychic is..." and I can't believe he couldn't predict I was going to click "skip ad".

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Some friends visited us in the garden yesterday and brought their new pup, which was like a mental recharging station for happiness.

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Moving On: My Infrastructural Turn

The next few months mark a series of “10”s for me. On the 10th September, it will be 10 years since my Ph.D. viva. In November, it will be 10 years since I got my first lecturing position (TT Assistant Prof) at the University of Lincoln. It’s 10 years since I met Dr Caroline Edwards and we began…

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A friend told me he has 27 students for his Eliot course this autumn. That's way more than four quartets, I said.

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Just seen the premise for See How They Run and the totally unsubtle Stoppard Real Inspector Hound references therein. Still looks great fun.

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Bloody hilarious. "Empower scientists". The government legitimated its totally inadequate response, leaving us with one of the worst death rates from Covid in the world, by falsely saying it was "following the science".
https://www.theguardian.com/politics/2022/aug/24/sunak-says-it-was-a-mistake-to-empower-scientists-during-covid-pandemic?CMP=Share_AndroidApp_Other

People didn't like the measures that were needed to stop 1000+ people PER DAY dying from a virus. So let's blame the scientists that we ignored anyway.

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Evusheld tweet for today: the NICE process is a *sick* move by @DHSCgovuk to bury it.

NICE won't publish a recommendation until end of May 2023. If they accept it, it's 90 days to rollout, so Sept 2023.

That date will be 1276 days of shielding for me.

https://www.nice.org.uk/guidance/indevelopment/gid-ta11102

There's no guarantee that there won't be a new variant by then, either, which they'll probably then use to reject the drug. I think I am just going to have to resign myself to endless isolation.

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I saw the cover design for my book, Password's, Spanish translation today. Apparently "History of the Password" was a better title in Spanish, even though it isn't quite what the book does... Still, exciting seeing this.

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The nurse who took my blood tests this morning said "I was the only person the other day in Tesco wearing a mask. But without masks and testing, I could end up killing my patients". I thanked her amid my despair. https://x.com/AlexRichter3/status/1562492933999566851

Our doctors surgery has a notice saying "please wear a mask because the child next to you in the waiting area could have cancer and be on chemotherapy and you might kill them". We should not have to ask people nicely if they'd mind not killing children on chemo.

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Back to work today after a holiday break. Just under 500 emails to sort. ✉️

Down to 250!

Down to 25 which all need answers. But that took 8 hours.

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Mrs Eve did a great job with some more house decoration today. If at first you don't succeed, add more Snoopy.

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Today is the last day of the longest holiday I've ever taken in my academic career and I finished Everett's THE TREES. A genre bending work that delights in fusing its inappropriate (though who am I to say that?) humour with its racial subject matter. Quite remarkable.

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Evusheld is used in Austria, Australia, Bahrain, Belgium, Canada, China, Czech Republic, Dubai, Denmark, Egypt, France, Germany, Greece, Hong Kong SAR, China, Hungary, Israel, Italy, Jordan, Japan, Korea, New Zealand, Republic Of Malaysia, Saudi Arabia, Singapore, Spain...

... Sweden, Switzerland, UAE, United States of America, Vietnam, Philippines

̶T̶h̶e̶ ̶U̶n̶i̶t̶e̶d̶ ̶K̶i̶n̶g̶d̶o̶m̶

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The argument I have heard for not providing Evusheld that most upsets me is: because it doesn't provide 100% protection, it might give vulnerable people a false sense of safety and they might go out and behave recklessly.

This narrative of "personal responsibility" and "freedom" only extends so far as ensuring that vulnerable and disabled people don't step over the line. I mean, imagine thinking that they should be entitled to having a life, too.

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This is the thing. Clinicians are saying we need it. Charities and patient groups are clamouring for it. It's not a party-political issue. The press from all quarters have supported it. So who exactly is blocking this and why? It's just incomprehensible. https://x.com/ChristopherPBS/status/1562077711690076160

Probably: £££?

But it doesn't cost that much.

They ship me immunoglobulin that costs 3x as much as this, every month.

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Settling down with my writing again this evening. I feel that this book is so close to being done, but there's still a small chunk to write on which I feel blocked. I've taken a fortnight away from it to do political campaigning, but now it's time to finish it...

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An amazing memory from 9 years ago, visiting Tokyo. So jetlagged on such a short visit that I walked across the city at night and arrived at Shibuya before sunrise.

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Feeling quite emotional here. My @COPIMproject colleagues know just how much hinged for me on the UK Government providing Evusheld. A life I could have had back. Now denied. So they sent me this in the post. Such kindness and care means a great deal to me.

I gather I owe particular thanks to @cmplxtv_studies and @alittleroad. Can't thank you enough.

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Why do you get car/motion sickness from, say, reading or taking eyes off the road... But if you close your eyes/nap, you don't?

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Some parts of the academic publishing workflow are ridiculous. I've had an accepted article waiting for its issue for almost 2 years now. I've taken a 2 week holiday. Worried that the proofs will be in my inbox and I'll have missed the return deadline during this window. 🤷🏻

I admit that, in these humanities publication cultures where things can take ages to appear, you don't want to do the typesetting right at the start - because authors are notorious for tweaking things. But ultra-short turnarounds after these delays aren't reasonable either.

Of course, there's the broader question of whether we could bypass such delays altogether

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A friend, who'll remain anonymous, was just quoted £1,350 for an initial healthcare consultation for his daughter. NHS waiting lists intolerably long - for a child who needs help. This is what we're losing to, by stealth, little by little.

This is why I won't campaign for Evusheld private availability, either. We need public healthcare, free at the point of use.

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The @DHSCgovuk says it won't buy Evusheld because there's insufficient data on "duration of protection against Omicron".

The Moderna vaccine bought by @DHSCgovuk this week literally says "duration of protection afforded by the vaccine is unknown".

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In 2019 I had cyclophosphamide for a dangerous vasculitis flare. Horrible chemo drug that caused clumps of my hair to fall out, not to mention the nausea. In any case, I shaved my head then to face that on my own terms and have ever since. Until now. Seems it will grow back OK!

Prof furry is back in town.

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Observations on my first serious visit to London in 2.5 years.

In the wider world: 95% unmasked. The occasional reminder of the pandemic with the odd maskee.

In the hospital: the inverse.

I've had hip and spine x rays today, a set of blood tests, and a couple of MRIs are lined up. Until we do the imaging, unknown cause on the hip pain/damage that I've had for over a year now.

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Today in (Fairport Convention nod) What We Did on Our Holidays, I must go to the hospital to appraise whether I need a hip replacement. Will also discuss the osteoporosis that caused my recent foot break. Mostly anxious about a waiting room full of coughing unmasked patients.

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The Government's decision not to provide Evusheld for the Covid-vulnerable will cost money as well as lives.

Widespread economic costs. Taking up ICU space. People who've abandoned their businesses employing people, to shield. Wasted other treatments.

https://inews.co.uk/opinion/the-governments-decision-not-to-provide-evusheld-for-the-covid-vulnerable-will-cost-money-as-well-as-lives-1797608#l6w4reaovsy9uwe46qi

On efficacy: we don't want 100% forever. We want good enough, now.

On cost: US government reserved 1.7 million doses at $855 million. https://healthpolicy-watch.news/94181-2/

So $503 per dose. Which is £420.

So for 200k UK people it's approx £105m.

This is so little in the overall scheme.

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Look, here's the thing. New vaccine. Great. Got MHRA approval. Will probably soar through the "process" (if such a thing even exists).

But not tested in immunocompromised groups.

Evusheld. Approved by MHRA in March for this group. Nowhere near being bought.

Where's the "evidence of duration against variants" that they demanded of Evusheld?

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It's great to be authorizing new vaccines for the winter... for those for whom they work. Fundamental equality issue here is that government is not providing the comparable protection to immunocomprimised.

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Further, on the timing of this, @DHSCgovuk's advice was received BEFORE the Phase Four Israel and French data were received.

So agree it should be published. But this decision needs an urgent review @SteveBarclay. https://x.com/cancermedic/status/1558863247415169024

So this was bad advice, against the published evidence, at the time it was given. But it's now TERRIBLE advice in light of the new data.

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On our The Next Generation sequential rewatch and Season 2's "Shades of Gray" is truly appalling.

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One of core problems with the recent @DHSCgovuk decision is this: some panel of unnamed people has produced an unpublished report from a meeting with no available minutes that contradicts the actually published evidence and on which the fate of 500k people rests.

We have no idea whether this panel was qualified to comment. Was it a group of surgeons with no experience of immunology prophylaxis? Was there any clinical expertise or just administrators? Lack of transparency is an abuse of process.

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A reminder of WHY we need @SteveBarclay to overrule @DHSCgovuk decision on Evusheld.

It doesn't provide 100% protection (no drug does). But it gives SO much more protection than our members have now.

There's no silver bullet. But all we're asking is for some safety this winter

People want to see their family and friends without the risk of death. They'd like a Christmas with loved ones, without the fear of critical illness. They'd like to be able to go work without worrying about ending up on a ventilator. The list goes on.

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500 people at whom we threw everything, treatment-wise. We cure people of cancer to let them die of Covid. It's absurd, just from a healthcare economics perspective.

But also: the stories people have told me, about the pain of their losses, are heartbreaking. Repeated every day.

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Toby, meanwhile, has a nice cooling wet blanket to handle the heat. He seems to like this! Or, at least, he hasn't shrugged it off or told us he doesn't...

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I read a review of an album this AM. I haven't heard it, so it might be good.

It praised the lyrics as being by "one of the most erudite wordsmiths of his generation". Could be true.

But the example given didn't persuade me: “Please, you ain’t fuckin’ with no amateurs, homie”.

Imagine making the claim of greatest wordsmith of a generation.

And then justifying this with "don't fuck with us".

I'm not saying this musician isn't a brilliant lyricist. He might be.

But this review made that case quite badly!

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This is among the worst points. Substantial global clinical consensus.

@DHSCgovuk conducts its own review and concludes that everybody else is wrong.

Good work. Slow hand clap.

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Here's the thing - the same issue w/ non-open science data, actually!

@DHSCgovuk issued its decision after a claimed "review".

But it hasn't published this review, which flies in the face of all published evidence.

So we can't challenge it. Undemocratic, unscientific, unfair. https://x.com/martin_eve/status/1558773426369724417

I've conducted a robust review of the evidence and decided that, despite all the published evidence to the contrary, gravitational waves don't exist.

Don't ask to see the review, please.

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Further lack of transparency in decision making at @DHSCgovuk: the RAPID C-19 taskforce publishes no full list of its membership. And it seems to have published no minutes that I can find anywhere. So a completely inscrutable committee.

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MPs from all parties, Lords from all parties (including Conservative ex-health ministers), hundreds of clinicians, 18 national charities, and thousands of patients are all calling for @DHSCgovuk and @SteveBarclay to reverse the Evusheld decision. It's not too late.

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I have a hypothesis that most British people have a nostalgia for butterscotch Angel Delight but that the time frame reference to which the nostalgia gestures is wildly divergent. For some the 80s. Others the 90s. Later? You can still get it, as my online weekly shop has proved.

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That Guardian headline of "disappointment" is quite a hilarious understatement. "People still in isolation after 2.5 years 'a little bit miffed' that they won't get the drug they need to be freed".

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Great letter from @GwynneMP and @vickyfoxcroft. This should be a cross-Party issue where we work to protect those who need it, not something with which we play political games.

@EnnalsEthan @BBCFergusWalsh @BBCr4today @SteveBarclay @DHSCgovuk @emilymorganitv https://t.co/5doI6lbHfX

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I partially apologise for the mono-thematic nature of my tweets at the moment and hope followers can understand. My life remains very limited due to Covid shielding and the #1 priority is to try to get it back. We can't march on the streets and so social media is a crucial tool.

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Please do tune in to @BBCr4today RIGHT NOW -- they are talking about Evusheld and the disgusting decision by the @DHSCgovuk not to purchase this on flimsy grounds. "We don't have enough long-term data on efficacy against Omicron." This is nonsense!

Speaker on @BBCr4today is doing a fantastic job of demolishing the useless @DHSCgovuk statement. They have stalled and stalled and stalled and we have lost months and months of our lives while they waited.

Now @bloodcancer_uk speaking on @BBCr4today: hearing from HUNDREDS of patients every week in desperation. I know this personally, too. @DHSCgovuk has gone against consensus of 125 clinicians and 32 other countries.

The NICE consultation at @DHSCgovuk mentioned on @BBCr4today is just an excuse to delay this BY ANOTHER YEAR.

Great commentary from @BBCFergusWalsh, too. The evidence is there: 125 clinicians back it; 32 other countries. WHY did ours come to a different decision? No sign of the report being published so it's unchallengeable. Complete lack of government transparency.

And now, if my inbox is any indication, I suspect we will have many more suicidal patients coming forward, driven to despair by perpetual isolation and the lack of any government care. They were holding out for Evusheld. @BBCFergusWalsh @DHSCgovuk @BBCr4today

Imagine saying "we don't know how long this therapy will work against the new variant" and using that as an excuse to DELAY. It should be a reason to ACCELERATE, so we can have whatever protection it provides in the interim. @BBCr4today @BBCFergusWalsh @DHSCgovuk

Further, you simply can't get those data. They've literally come up with an impossible standard of evidence. Of course you haven't got long-term data against Omicron. This variant only emerged very recently! @BBCr4today @BBCFergusWalsh @DHSCgovuk

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Today's reading was Percival Everett's THE TREES. I'm writing about "attention" in Everett's work at the moment and this is a (horrific) gem of a novel. Interesting how children often form the locus of attention or attention deficit in his works.

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So @DHSCgovuk promised media a statement today, but it didn't emerge. Too much to hope that there's a rethink about the winter strategy and vulnerable groups underway?

It's never too late to admit that a change is a good idea. There's no shame in it when it could repair so many broken lives.

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The more I read about effective altruism, the more "yeah buts" I have. The whole "you'll do more good if you go into banking & earn lots to donate than if you are a nurse" still relies on there being nurses. Privileges an over-class of moralists who think themselves more capable.

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Feel sick & disgusted. @DHSCgovuk has shelved plans to protect the most vulnerable patients with Evusheld this winter, against the advice of 125 clinicians. This is a complete u-turn and a betrayal of the people who most need protection. A third Christmas in isolation.

What they've done, instead, is to launch a NICE consultation that will kick this into 2023. This is, of course, classic "consultation" procrastination. Claiming the "process is underway" and that patient groups are "being consulted", making us appear to condone the delays.

No other Covid medication was made to go through this process. Is it because it's "only" a group of vulnerable people that it has had such exceptional treatment? What of Global Britain leading the world... when 32 other countries have been using this drug for up to 7 months?

Recent data showed that over 25% of people in intensive care units, at the moment, are immunocompromised. We could prevent this. But the government seems not to be interested.

500,000 people are living restricted lives. Their families too. Where is the care? The winter is going to be bleak with our groups bearing the brunt of this. The UK government's strategy of ignoring the virus directly contradicts their promise to protect the most vulnerable.

What signals are they sending to the pharmaceutical industry, too? The UK simply isn't interested in you creating and providing a drug to protect this group. You can make it, but we won't buy it.

The arrogance of the UK, too. 32 other countries are giving it. 32. With excellent Phase Four real-world results. At not massive cost. What do our lot think they know that everybody else doesn't?

AstraZeneca have not been asked to reserve any stock of this drug until Summer next year. Thrown to the wolves.

What was the promise? So we've had a targeted treatment authorised since March. Where is this protection?

It will have been 1,000 days of shielding for us on the 1st December. I just don't know quite how to say how bleak it feels with no prospect of it ending. 5 vaccine doses. No antibody responses.

Also, it's so ridiculous that we are treating people for kidney failure, cancer etc & then not protecting them. One of our group member's fathers died from Covid after his treatment regime. This just makes no sense. Throw all that treatment at someone only then not protect them.

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Today's reading was Percival Everett's short story collection, Damned If I Do. Did it with Toby's company. Reading and dogs is a homely combo.

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I played/sung Danny in a school production of Grease and of course admired ON-J's performance in the film. Great songs. But I came away feeling it was basically a horrendous story encouraging people to give in to peer pressure 😂

Actually, this just reminds me of a hilarious incident, too. When I was 17 a bunch of school bullies discovered that there was a film of this. They started goading me that they were going to get hold of it and play it. I said "great, I can't wait to see it!"

One of them pretty much outright said "Oh. If you're not embarrassed, that's no fun."

Seemed a better outcome than Grease's finale.

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I know I'm both pretty deaf - using hearing aids - and also sound like a curmudgeon ahead of my years, but contemporary sound mixing realism in TV is appalling. I've needed subtitles on Strange New Worlds and The Sandman.

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This afternoon I read Percival Everett's WOUNDED. A remarkable contemporary Western of sorts with a laser sharp eye on justice, law, and the "frontier".

Yet "Everyplace is the frontier."

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This week I learned how you register yourself as a stakeholder group for a NICE consultation and how to write a scoping consultation review for it. Good to have a hobby.

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Today I read Jules Howard's WONDERDOG, a history of science and dogs. The opening chapters were horribly distressing. The history of animal suffering in the name of science is more than I can take. But later chapters on attachment - and, even "love" - were fascinating.

Howard is good at highlighting the people who campaigned for animal rights - and even, at one point, lists the names of Pavlov's dogs, in memorium.

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Watching the 1989 STAR TREK: TNG episode, "Time Squared".

Features the sample that Orbital nicked for "The Moebius": "there is this theory of the Moebius. A twist in the fabric of space where time becomes a loop. / When we reach that point, whatever happened will happen again."

https://youtu.be/QjvQj9RkTqI

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I've had to help two near-suicidal vulnerable shielders this week - not including the less severe cases - who emailed me in desperation.

"I don't know how I'm going to get to my chemotherapy appointment safely when nobody is wearing masks on the train".

It's not a huge ask. https://x.com/chantz_y/status/1555334096175280129

I'm not qualified to give this help, but I've passed them on to people who, I hope, can. The problem with fronting a group is that people turn to you. And I don't have good answers for why the world won't make minor accommodations to protect their lives.

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Sitting down with Tom Drury's The End of Vandalism though and laughing out loud at parts. A very wry sense of humour here that builds as gradually as the plot.

"The arsonist shook his head and said if it was him, he would play it safe and call ahead."

"His face was narrow, his hair thick, his eyes widely spaced. He'd been working with horses a long time."

"Finally, they sat... reading the intimidating instructions that came with the hair dye."

"You don't want to do your eyebrows, do you?" said Joan. "It could cause blindness."

"In that case, no," said Tiny.

Tragedy here, too. A traumatic miscarriage painted in heartbreaking detail.

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My wife has, though, this morning fashioned a frame and mounted this lovely lily picture, painted by my stepmother-in-law. Brightens up the hall enormously.

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Since breaking my foot 7 weeks ago, I've lost basically any fitness I had. Most exercises are off limits with arthritis and low bone density, but I started with a very light and very short cycle on my stationary bike today. Bloody hard work but determined to get it back.

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Pointing out that our PM didn't keep to a promise is a bit like saying water is wet, but it'd be nice to think that, somewhere in government, some still care about truth.

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Assume the governor of the Bank of England will be taking a massive pay cut to do his bit to stem inflation? Paying people £575,000 per year is only likely to embed inflation.

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One of the most ridiculous cravings I have developed for pre-pandemic life is... Baguettes from Pret a Manger. Now found that Sainsbury sell bake-at-home baguettes & they're good! So all I need now to replicate the experience is to give a huge amount of money away every lunchtime

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We're in a quandary with Toby. He's panting a lot, even when it's cooler. The vets can't work out if he's in pain or not. He won't settle down. We have some anti-inflammatory meds but doesn't seem to help enough. He's otherwise normal - a fussy eater, but eating. He's a worry.

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A brief lunchtime listening break to this Record Store Day offering from Moorcheba

I cannot spell Morcheeba on my phone

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Just catching up on the sad news about Nichelle Nichols. A trailblazer even while the roles played by African-American women in real-world space exploration - Katherine Johnson, Dorothy Vaughan, Mary Jackson, and others - could still be better known.