Dad, spouse, Professor of Machine Learning
@UniofOxford
, Co-Founder Mind Foundry, Director
@aims_oxford
. Bayes, Long Covid, porridge, AI must be good for humans
When I got
#LongCovid
in March 2020, I was 38 and healthy. If you are anything like I was then, it is hard to understand how bad Long Covid is. I think that we all have an instinct to just… look away. But, please, it is important that you look. 1/15
Is Omicron mild? Or perhaps it just attacks lungs less, leading to less quick hospitalisation/death, while attacking the rest of the body more, leading to more progressive illness & disability over months? Letting Omicron infect everyone before we'd figured this out seems… bold
I keep seeing people say "the world has moved on from masks"—um, I'm in Japan, *everyone* is masked, indoors and outdoors, and last I checked Japan is, in fact, part of the world
Calling Omicron "mild" because it is possible that it may be less lethal than Delta
is like calling Jeff Bezos "poor" because it is possible that he is less wealthy than Elon Musk
To those who provided negative feedback on one of my in-person lectures because I was wearing a mask—unfortunately, the very long list of things for which I will happily apologise does not include wearing a mask
You may be concerned about being manipulated by fears of
#LongCovid
. Fair enough. Please trust me—I have nothing to gain from tweeting on this topic (look at my bio). I am here to say, simply, that I can personally attest that Long Covid is real, very bad, and seems far from rare
When, in casual conversation, someone notes how many heart attacks are happening now, I always point out that covid can cause microclots, and they always *immediately* change the topic, like I had said that I was secretly a pineapple
"Long-term masking is unrealistic" translates to "I know nothing about Japan".
I'm in Tokyo and the overwhelming majority are masked even on the street.
When I got covid, it was "mild". However, over months, it got worse, and then much worse. The effects of a virus on the body work on a timescale not of days, but of months, of years, of a lifetime.
I have spent my entire academic career working on probability theory, and, I'm telling you, a 3% probability of Long Covid does not mean "rare", it means "wear a mask"
Most are not OK with eating a raw egg because of the 1 in 20,000 risk of Salmonella—which causes diarrhoea & vomiting.
Most seem OK with getting covid (when triply-vaccinated) despite the **1 in 20** risk of
#LongCovid
—which causes diarrhoea, vomiting, BRAIN DAMAGE & much more
The name "brain fog" doesn't do justice to the experience. Practically, it means that you can't think right. It turns out that thinking is pretty core to meaningful existence! At my worst, over several minutes, I couldn't work out a seatbelt. 5/
People do realise that the "long" in
#LongCovid
could mean "the rest of your life", right? *403,000* people in the UK have already been ill for TWO YEARS
My views on covid seem to have become a bit, well—radical. Please allow me to explain. I did not start out radical. I am lucky to have a settled, establishment-adjacent, career. Three years ago, on the eve of the pandemic, I trusted the establishment.
Long Covid feels like a hex. Your body and brain are wrong, in different ways on different days, unpredictable and unsettling. On the good days, you doubt yourself; on the bad, you doubt everything. The illness is capricious, boundless, wicked. 3/
Now, I am doing a lot better. I have not had any real symptoms for six weeks. What does that mean? Well, for me, it means the world. It feels like a miracle. However, otherwise, it means nothing. Doesn't mean you can ignore Long Covid. 11/
I continue to write about Long Covid, not because I'm trying to milk sympathy (I'm doing well, honestly), but because there are so many people still sick, and many more getting sick, many much more sick than I was. 12/
Re: "masks don't work"—I just spent fourteen days masked at home with my covid-positive wife and two covid-positive young kids (including lots of up-close and physical play) without getting sick
"Fatigue" similarly does no justice to the experience. Fatigue means there is less of you. You are less. You can't, just can't, get out of bed. This is *not* psychological (although fatigue may *cause* depression!). Your body, physically, does not have the energy. 7/
Brain fog is a bit like being *extremely* sleep-deprived—remember, sleep deprivation is literally a technique of torture—but you can't sleep off brain fog. It feels like being lost in a fog, sensing dark shapes shifting around you, losing yourself. 6/
My own low-points: early on, I collapsed, shaking, and was taken to A&E in an ambulance. A year later, I did not have the energy to leave the house. Formerly, I was a marathon runner, but I brought on a bad relapse with a 700m walk. Many people have it much, much, worse. 2/
In the UK alone,
* 1.1 **million** people have had symptoms for over 4 weeks,
* 831,000 for over 12 weeks,
* 405,000 for over a year.
* 211,000 have had their day-to-day activities "limited a lot".
13/
And Long Covid seems eerily-similar to another virally-induced illness, ME/CFS. 17-24 million globally suffer from ME/CFS, many have suffered for decades, many without getting better ()
14/
Dr. Fauci has stated that he has personally treated several acquaintances battling
#LongCovid
, which he emphasizes “is very real” and is “very strikingly similar to
#MECFS
”. ME/CFS already affects as many as 2.5 million Americans and for many is triggered by a viral infection.
Worst, ME/CFS research has been shamefully underfunded, treatment usually more harmful than helpful, the suffering ignored. This has to stop. Don't look away. This is important.
15/15
@ResearchSloth
@NIHDirector
@NIH
True, the most funded disease receives over 100x the per-burden funding of ME/CFS so the vertical dimension of the graphic might exceed Twitter’s limits.
Animations can help, like this comparison of
#MECFS
funding to
#MS
funding:
Symptoms are interlinked. Clearly my worst cluster is neuropsychiatric, including co-occurring headache, dizziness, insomnia and anxiety, alongside brain fog. 4/
More precisely, maybe you could get out of bed, but the cost to your health would be horrific. Pushing beyond your limits is a sure-fire way to make all symptoms much worse, maybe even to bring on new ones. You may not realise your mistake for a day or so. 8/
The thing is, we've tried all the *easy* answers to covid—we've tried "herd immunity", we've tried "vax-and-relax", we've tried "you do you"—and people are *still*, four years in, getting way too sick. All we've got left are the *hard* answers—let's try cleaning the air
Things a mask-wearer does not owe you
- an explanation
- removal of their mask to improve communication a teeny bit
- emotional reassurance that you, a non-masker, will be fine
But there are so many other symptoms! I have had ongoing gastrointestinal symptoms; at one point, diarrhoea more than twenty times per day. I also had a sore throat, continuously, for a year and a half, during which time my voice sounded hollow, weak. 9/
I wear a 3M Aura when I lecture, as I feel that the flat central portion makes me easier to hear. I expect I'll be wearing a mask when lecturing for the rest of my life
Since we're doing "masks don't work" again, I thought I would remind you of the two weeks I spent masked in the same rooms as my covid-positive wife and two kids without getting sick. Might be worth considering now H5N1 is in the air
I don't mind committing to masking for as long as is required, what I mind is that, if we all made a similar commitment, we probably wouldn't even require all that long
I am pretty sure
#LongCovid
has changed me forever. Certainly, the illness has left its biological scars—I still get these minor pains in my arm and neck—but, perhaps, more importantly, I cannot unsee what Long Covid showed me about our society
Then some weird symptoms. For six months, my eyesight got progressively worse; then, it got better. A dull ache halfway up my left arm, always happening at exactly the same time as a sharp, stabbing pain in my Adam's apple. 10/
A society in which everyone wears masks, testing is cheap, air is kept clean—is not science fiction. Such a society doesn't require any big breakthroughs. Doesn't require big sacrifices. Doesn't require much at all, beyond a commitment to not ignoring mass suffering.
Things to worry about
- covid
- bird flu
- climate change
- AI
- nuclear war
Things not to worry about
- the impacts of a few weeks spent at home three years ago
In retrospect, the only influence that stopped me from getting even more sick with
#LongCovid
was—not my doctors, not my employer, not the health authorities—but a collection of sick strangers on Twitter
I'm a bit annoyed that when my heart rate got up to **200** during a short walk, my (former) doctor said that my Garmin must have been wrong, rather than investigating whether it might have had something to do with my having been infected by a virus causing endothelial damage
Masking during the pandemic has revealed that the almost-universal answer to "if all your friends jumped off a bridge, would you jump too?" is "yes, and we would mock anyone who did not jump our entire way down"
To my regret, I have taken my mask off a few times (for important photos for work)—due to what felt like irresistible social pressure. I think social pressure is the main reason a LOT of people are not currently wearing masks, which they may also come to regret
I really feel for the brilliant engineers who built these astounding, cheap, devices (HEPA, FFP3) capable of plucking microscopic viral particles from the very air we breathe, only for everyone to be like—thanks but no thanks, give us some more of those viral particles
Some say that wearing a mask is cowardly, but I think that wearing a mask is brave—brave for standing out, brave for standing up for the vulnerable, and brave for looking reality square in the eye
I had to "pass" a depression screening before getting a referral to a
#LongCovid
clinic. Confirming that someone is not depressed before allowing them care for Long Covid is like confirming that someone is not emitting smoke before allowing them care for being on fire.
Reminder that it's only been around four years since the first people were infected with SARS-CoV-2—it takes around eight years after someone is infected with HIV for them to develop AIDS
My taxi driver just said, "you know, the world health organisation just said that covid was over". I kept my cool, and explained that covid most definitely is NOT over, and, by the end, he seemed to agree that we still need to take precautions. I tipped both cash and a mask
Why isn't our capitalist economy all-in on trying to get us to buy masks? Business masks, summer holiday masks, aeroplane masks, baby masks, new season masks, masks that match your shoes? Why is the only accessory that is not ruthlessly marketed the one that could stop you dying?
Some people don't mask because they think, somewhere at the back of their mind—"even if I do get
#LongCovid
, I will overcome it, because I am strong". I'm sorry, but Long Covid is not like that. Like, at all
My wife, wearing a FFP3 respirator, got harangued in the hospital by a nurse because "masks don't work unless they're properly fit tested". The nurse was unmasked
To recap, we had an opportunity to normalise masking and cleaning the air, to destigmatise and address chronic illness, and to defeat the anti-vaxxers once and for all—and we blew it
"Omicron is mild" is a distraction.
"Masks don't work" is a distraction.
"Long Covid is rare" is a distraction.
What they're trying to distract us from is current reality—a rapidly-evolving virus, that can damage every organ in our bodies, is infecting us over and over and over
In inviting my six new undergraduate students to a welcome meeting today, I had written "FYI I will be masked"—and all six arrived at the meeting masked!
I wish people would stop getting so offended when I ask them to test, put on an air purifier, open a window—the whole point of asymptomatic infections is that it is not necessarily that I don't trust YOU, it's that I don't trust this mendacious bastard of a virus
Aside from me, my wife and kids—I don't know anyone who always masks when indoors in a public space. As far as I know, we could be the only four in the whole city. Feels lonely.
During my journey to Tokyo, I masked from the moment I left home until my portable HEPA filter had purified the air in my hotel room (~20 hours). I unmasked only briefly to sip water, and to pass immigration/customs checks—I wish those checks required the officer to mask.
As a masker, am I "living in fear"? Yes! I do fear my family being maimed by covid. And I think people who refuse to mask, even in healthcare settings, are ALSO living in fear—fear of standing out, fear of change, fear of acknowledging vulnerability
Did we respond well to a long-anticipated pandemic? No.
But, 3.5 yrs in, have we learned our lessons? Also no.
But have the hardships strengthened bonds within our communities? Um still no.
But have we carried those who have been harmed with unwavering strength? Again—that's a no
You don't know if you are (asymptomatically) infectious
You don't know if the people around you are vulnerable
You don't know if the people around you are infectious
You don't know what will be left of you after your next infection
But you think you know not to mask?
A lot of people sure feel entitled to an explanation of your mask. What they probably want, of course, is *reassurance*, that you are weird, that they are fine, that they are not at risk—if so, hoo boy, are they talking to the wrong man
Reasons someone may be masking outside
- reducing the number of times they take a respirator on/off to make straps last longer
- (invisibly) vulnerable
- protecting the vulnerable
- allergies
- pollution
- accessorising outfit
- none of your business!
In the lectures that I give in-person—masked, to audiences almost universally unmasked—I have started subtly mentioning that we are in a pandemic of an airborne virus that causes long-term disability. This feels quite rude! But I think speaking up is the right thing to do?
You need to know someone pretty well to hear their real covid stories—an athlete losing most of their lung capacity, a dad now using a cane to walk, a daughter now only able to work half-time (all true stories from folks I know). Why aren't such stories more out in the open?
"Wearing a mask is not normal"—well, yes, you are probably right that the "normal" thing to do during a pandemic, historically, is to get sick and maybe die
I saw a stranger in the airport also wearing a 3M Aura (~everyone else was unmasked) and so I ran up to him and congratulated him on his mask choice. He seemed so happy! I will definitely be congratulating respirator wearers in future—I think it helps us to feel less alone
All of us who got Long Covid *before vaccines were even available* need to keep telling our story because there seems to be a concerted campaign to rewrite history with "it's the jab"
I know society isn't upset, but is it OK if I AM upset—that our two little kids have a multi-system vascular disease, with who-knows-what consequences for their long-term health, AGAIN
My views on covid seem to have become a bit, well—radical. Please allow me to explain. I did not start out radical. I am lucky to have a settled, establishment-adjacent, career. Three years ago, on the eve of the pandemic, I trusted the establishment.
@gershbrain
I believe that such sickness is likely related to covid, due to the acute phases of repeated covid infections, the lingering effects of Long Covid, and the susceptibility to other illnesses caused by covid-induced immune damage
Sometimes I think about how we could have spent the last three and a half years installing HEPA filters, implementing East Asian masking policies but with high-grade respirators, running Warp Speed-like research programmes on Long Covid and ME/CFS—and I get very sad
Schools should include "covid ed", covering the real basics—aerosol physics, asymptomatic transmission, Long Covid (including myalgic encephalomyelitis, POTS, dysautonomia)—established science that everyone really needs to know