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What Long COVID Taught Me About Life (and Data) | Giorgia Lupi | TED

Following a long COVID diagnosis, she tracked her symptoms meticulously over four years, the data culminating in a visual “New York Times” narrative that resonated deeply with many others suffering from chronic illness. Lupi invites us to consider data not as a rigid or objective truth, but as a living language used to better understand…

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Following a long COVID diagnosis, she tracked her symptoms meticulously over four years, the data culminating in a visual “New York Times” narrative that resonated deeply with many others suffering from chronic illness. Lupi invites us to consider data not as a rigid or objective truth, but as a living language used to better understand ourselves, offering a surprising shift in perspective — depending on where you look. (Recorded at TED@BCG on September 12, 2024)

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53 Comments

53 Comments

  1. @spimeminister

    October 17, 2024 at 7:37 am

    Long Covid:

    Lyme Disease:

  2. @vikramsinghdutt

    October 17, 2024 at 7:44 am

    It taught me media controls human perception.

  3. @MichelleEvans_CatLady

    October 17, 2024 at 7:45 am

    As a Data analyst that nearly died from bacterial pneumonia and then got COVID 6 weeks later, this excellent work. I don;t even have the energy to have put that together

    • @AntoanetaStancu

      October 17, 2024 at 7:53 am

      Yeah.. that’s one factor..or symptom: you just run out of energy and it feels like it’s not you… I was drained

    • @AntoanetaStancu

      October 17, 2024 at 7:55 am

      But I think that what was really damaged or very damaged în that time with long Covid was our psychological strength.. We were or at least I was really shaken by that illness

  4. @VioletLaLaMoon

    October 17, 2024 at 7:47 am

    I was the only person in a car of 4 after a week of traveling together that got covid. It’s been almost 3 years since then. At the time I struggled with all of the symptoms she describes especially that first week. Afterwards I had fatigue for months, couldn’t taste or smell for over a year. I still have recurrences of those symptoms but they are not long lasting; all of a sudden I can’t taste a meal or think clearly…that was the hardest…get fatigue for no reason.
    Eventually, I had to shift my focus too.

  5. @rebeccafabian5980

    October 17, 2024 at 7:55 am

    Yay I hope you had fun visiting your hometown

  6. @PavelSusin

    October 17, 2024 at 8:28 am

    Narcissism level: Scientific.

    • @squarepeg4435

      October 17, 2024 at 5:44 pm

      Trying to understand and visualize a debilitating illness which medicine doesn’t understand and can’t treat, is narcissism?

      I’ve been dealing with this illness for 4 years and have also had to take meticulous notes, measurements of patterns in food, sleep, pain, etc.

      American health care providers aren’t equipped or motivated to explore novel viruses for which there is no known treatment. All of the advances I’ve made in my recovery have been due to revelations discovered via my own data. We have to aggressively self-advocate and often still don’t get adequate care. Empathy goes a long way.

  7. @markyparky2980

    October 17, 2024 at 8:32 am

    Probably that we’re easily brainwashed

  8. @SirSwaggyy

    October 17, 2024 at 9:07 am

    Didn’t they try telling us that long covid didn’t exist?

    • @SirSwaggyy

      October 17, 2024 at 11:38 am

      @@Rabbitt-d6y funny how that happens eh?

    • @squarepeg4435

      October 17, 2024 at 5:31 pm

      Look at these comments or anywhere else Long Covid is discussed. MANY still say the same. They mock us and claim it’s a “hoax”. The cruelty is pretty unbelievable. I’ve been dealing with this for 4 years. The treatment from others has only gotten worse as the world “moves on from Covid”.

    • @keenarnia

      October 17, 2024 at 7:15 pm

      Take some more Vaccs and you’ll be fine!

  9. @byoutifulmusic

    October 17, 2024 at 9:08 am

    Imagine those poor souls who aren’t even aware of “long covid,” .. or that they may have or may have had it.

  10. @marcvolpe8252

    October 17, 2024 at 9:17 am

    She is dua lipi sister

  11. @MitchAcademy

    October 17, 2024 at 10:06 am

    I am in control of my illness. My illness does not control me. Thanks for sharing your fight. 🥊

  12. @sticks2478

    October 17, 2024 at 10:44 am

    Long covid taught me that EVEN a comment as harmless as this, is now up to be fact checked and censored by a 27 year old with 9 pronouns and an electrical engineering degree. Thankyou for stealing our freedom google. All bow to the almighty Google

    • @leonardofabbri7930

      October 17, 2024 at 12:16 pm

      They ridiculous with this Covid thing. My dad has been diagnosed with Strumpell Lorrain syndrome for two decades, no one between Governments, science, influencers and influenced has ever given a damn

  13. @Ninja9JKD

    October 17, 2024 at 10:51 am

    Since you like data so much, you might want to look up all the data on excess mortality and all cause deaths.

  14. @Ninja9JKD

    October 17, 2024 at 10:53 am

    So smart, so much data, yet no clue that we’re being murdered by those people in white butcher coats called doctors.

  15. @leonardofabbri7930

    October 17, 2024 at 12:13 pm

    My dad has been diagnosed with Strumpell Lorrain syndrome for two decades, no one between Governments, science, influencers and influenced has ever given a damn

  16. @BrandonAbernathy

    October 17, 2024 at 1:18 pm

    So is there any leftist fantasy that TED is going to leave alone? Geez, and to think this used to be respected.

  17. @Zerael071

    October 17, 2024 at 2:13 pm

    What’s she saying has been helping me too. But I came to that positive change through some Bible verses.

    “Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you.”
    ‭‭Philippians‬ ‭4‬:‭8‬-‭9‬ ‭NKJV‬‬

    And

    “And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.”
    ‭‭Romans‬ ‭12‬:‭2‬ ‭NKJV‬‬

    Same neuroplasticity effect.

    So focusing on the good things and victories definitely makes a difference. For a period I stopped using my smartwatch as well, because I was monitoring my symptoms too much and it does give you a feeling of control. Also, stopped looking up symptoms on google so much. My watch is focused on fitness now for the most part; I occasionally slip back into monitoring and have to get back out of it again.

    Oh, an additional thing I’ve been trying as of lately: cutting out dairy, gluten, and inflammatory foods. It helps. I also got an allergy test. From an allergist, not the home kits. Found out I’m now allergic to a lot of foods I eat. Getting rid of those can help take stress out the system and allow it to heal and recovery more properly. I noticed my histamine response was more intense after all this long COVID started. So this may not be the same for everyone.

    Lastly, more sunlight and mild exercise if you can. Walking! That’s it. Walk at the park, beach, get a treadmill or mini stair stepped. Some mild exercise and getting extra sunlight helps a lot!

    I still have symptoms but they aren’t as crippling. Hope this helps. 🤎

  18. @jamesmartinho9100

    October 17, 2024 at 3:04 pm

    I didn’t get the vaccine nor did I get sick.
    This taught me NOT to trust the government

    • @mbergamin16

      October 17, 2024 at 8:18 pm

      Pure blood ✊

  19. @hiepkhach789

    October 17, 2024 at 3:11 pm

    ❤❤❤❤

  20. @jasons6229

    October 17, 2024 at 4:20 pm

    “Long Covid”

    Good grief. 🙄

    • @squarepeg4435

      October 17, 2024 at 5:39 pm

      You have absolutely no idea what this illness actually encompasses. Those of us living with it (most, like me, were early infections ins early 2020 when no treatment was available and the virus was its most virulent).

      I am young and used to be a competitive runner and swimmer. VERY fit. Within 2 months I was in a wheelchair and couldn’t remember how to tie my own shoes. I didn’t know what year it was or city I was in. I couldn’t breathe, couldn’t walk and never got better.

      I had a physical 3 months before I was infected which showed perfect health with labs and scans. After, empirical evidence showed the dramatic effect on my heart, lungs, blood and cognitive function. We aren’t “faking it”.

      We are met with ubiquitous derision from comments like yours, doctors too arrogant to admit they don’t understand the illness’ mechanisms or treatment. Imagine if you got an illness which robbed you of your ability to live independently and free of pain. And had to endure constant cruel comments telling you your disabled existence is actually just you “faking it”.

      You didn’t have this experience? Count yourself as fortunate. Empathy never hurt anyone. I promise, at some point, you or someone you love will have debilitating health issues. You’d be well to treat others now as you’d like to be treated then.

    • @mbergamin16

      October 17, 2024 at 8:17 pm

      @@squarepeg4435 No where in your rant did you disclose if you took the vaccine or not? Did you? If so when did this magnum opus of varying conditions begin?

      None of what you listed comes from, or is a linked side effect of the super flu……but the vaccine perhaps 😆

  21. @squarepeg4435

    October 17, 2024 at 5:28 pm

    Beautiful and moving. I saw this piece in The NY Times last December and wept.

    I’ve had Long Covid since 2020 and have been in and out of a wheelchair, lost my independence, cardiac issues and my immune system is now so weak I can’t be around others without a mask so I’m unable to be social.

    Those who haven’t lived this can’t comprehend how painful it is to have a debilitating illness that has been politicized and scoffed at as a “hoax”. It exponentially increases the difficulty. When you have MS or Lupus, no one tells you your illness is a hoax and part of the “deep state”. People don’t cough in their faces and hurl insults.

    It’s also made more difficult by the fact that billions of people have had Covid. Most don’t get Long Covid and lack the empathy to comprehend that everyone’s bodies and experiences are different.

    Love to all of the other members of this community.

  22. @Benoit-Pierre

    October 17, 2024 at 6:42 pm

    Ask Diana and her husband …

  23. @HieouyaAgnèsDoyo

    October 17, 2024 at 7:37 pm

    I recently sold some of my long-term position and currently sitting on about 250k, do you think Nvidia is a good buy right now or I have I missed out on a crucial buy period, any good stock recommendation on great performing stocks or Crypto will be appreciated..

    • @SonyaYeva

      October 17, 2024 at 7:37 pm

      As a beginner investor, it’s essential for you to have a mentor to keep you accountable.
      Ruth Ann Tsakonas is my trade analyst, she has guided me to identify key market trends, pinpointed strategic entry points, and provided risk assessments, ensuring my trades decisions align with market dynamics for optimal returns.

    • @JoseLopez-lf9rw

      October 17, 2024 at 7:38 pm

      I managed to grow a nest egg of around 120k to over a Million. I’m especially grateful to Adviser Ruth Ann Tsakonas, for her expertise and exposure to different areas of the market..

    • @SonyaYeva

      October 17, 2024 at 7:38 pm

      I don’t really blame people who panic. Lack of
      information can be a big hurdle. I’ve been
      making more than $100k passively by just
      investing through an advisor, and I don’t have
      to do much work. Inflation or no inflation, my
      finances remain secure. So I really don’t blame
      people who panic.

    • @JoseLopez-lf9rw

      October 17, 2024 at 7:38 pm

      Without a doubt! Ruth Ann Tsakonas is a trader who goes above and beyond. she has an exceptional skill for analyzing market movements and spotting profitable opportunities. Her strategies are meticulously crafted based on thorough research and years of practical experience.

  24. @CaliberDawn

    October 17, 2024 at 9:02 pm

    Long Covid is basically indistinguishable from cfs, because cfs stems from a virus you just don’t know which (this research comes from Dr. John Chia)

  25. @Midgeridoo

    October 17, 2024 at 9:44 pm

    Omg how is she not masking?! 😮

  26. @gwilkins4617

    October 17, 2024 at 10:29 pm

    Long covid is similar to CFS

    • @themris

      October 17, 2024 at 11:11 pm

      From what I can tell, long covid is just an umbrella term for ME/CFS plus other long term damage that a bad viral infection can cause (like heart damage).

    • @gwilkins4617

      October 17, 2024 at 11:15 pm

      @@themris agreed

  27. @hgrace0

    October 17, 2024 at 11:53 pm

    This was a beautiful message. Thank you for your insight

  28. @welcome.421

    October 18, 2024 at 12:46 am

    فلنكن شاكرين للأشخاص الذين يجعلوننا سعداء، فهم البستانيون الساحرون الذين يجعلون أرواحنا تزدهر 🌸

  29. @Jpeverything62

    October 18, 2024 at 9:43 am

    It taught me how to basically fool the whole world and wreck the economy within two years.

  30. @Pavlikivanov1

    October 18, 2024 at 11:11 am

    U sure it’s not vaccine injury?

  31. @eltoro4227

    October 18, 2024 at 11:57 am

    Это история о том как страх побеждает организм. Я за 2 года(2020-2022) надевал маску только до марта-апреля 2020, потом я понял что это не опаснее обычного гриппа и что всё это умышленно раздувается властями с помощью СМИ. С тех пор я ни разу не надел нигде маску(ругался, скандалил призывая соблюдать законы в магазинах когда мне не продавали продукты, нашел автозаправки где мог заправляться без этой унизительной процедуры-надевания тряпки на лицо), и естественно не делал никаких вакцин. В итоге я болел простудой 2 или 3 каждый раз не больше 3-5 дней.

  32. @chrismacdonald8014

    October 18, 2024 at 2:50 pm

    Long covid sounds super ‘safe and effective’. They totally know what they are talking about. 😆💯

  33. @curtisbraun1885

    October 18, 2024 at 6:13 pm

    Best data = long COVID only exists for vaccinated.

    Or is it the wealth generation on pharma stocks investments by policy makers and those attached?

  34. @Mkbshg8

    October 18, 2024 at 10:53 pm

    Sorry but why would you need to visit a Dr hundreds of times? I do empathise with her as I have had it and think I have long covid too but visiting a Dr so many times seems pointless.

  35. @vassiliosca5715

    October 19, 2024 at 5:15 am

    “The real question and concern is: Without antivaxers who will bury all the vaxed?”😁

  36. @pensivepenguin3000

    October 19, 2024 at 10:57 am

    I don’t buy it. Covid is an acute infection like the cold or flu. Once it goes away, it goes away. I think all this stuff about Long Covid is in peoples heads, just like chronic fatigue syndrome. Some people just want pity or a reason to get attention

  37. @JK_JK_JK

    October 19, 2024 at 8:34 pm

    What is the Covid-related mortality for non-elderly persons with no comorbidities???

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