from Hacker News

Science YouTuber physicsgirl (Dianna Cowern) stands for the first time in 2 yrs

by m348e912 on 1/29/25, 6:16 AM with 301 comments

• by tunn3l on 1/29/25, 10:20 AM

  I'm 22 years old and suffer from Long COVID for 3 years now. I've written a bout my experience on my blog: https://tunn3l.pro. although not bedridden, my life got totally flipped upside down. I just want to live a normal live again. To all ME/CFS and LC sufferers: Don't give up!

• by tednoob on 1/29/25, 7:19 AM

  My sister had ME/CFS after she had a burnout after her second kid. She was never permanently bed ridden but sometimes had to spend days resting or recovering after strain. She's not well today, but much better than at her worst. There wasn't really an accepted diagnose for it when my sister got it, and she had to fight to be recognised as sick.

  I do wish Dianna the best recovery and future progress.

• by dpz on 1/29/25, 9:43 AM

  One of my dearest friends suffers from ME/CFS - she's been bed ridden for 3 years now. Any stimulation is just so painful her. Seeing Dianna actually able to get out of bed has brought a bit of hope back into my life

• by csours on 1/29/25, 7:34 AM

  Anecdote: Back in October '24 I got Covid. My only symptom that stuck around was lack of taste on my tongue (NOT Anosmia, it's lack of salty/sweet/sour/bitter response on the tongue itself), but only on the right half of my tongue. It slowly got better, but last week I lost taste on that side of my tongue again. The taste is coming back again now.

  Anyway, I have no idea what's going on with me; it's not really severe enough to investigate further right now, and my case is only the tiniest part related to Dianna's.

• by teebSQAD9 on 1/29/25, 12:36 PM

  I’ve had long covid for a couple of years now. It’s a really difficult disease, in part because different people react very differently, and there may even be multiple mechanisms so it’s not exactly a single disease.

  What has really helped me has been wearing a nicotine patch occasionally. I was never a smoker, but I came across this very small study [1] and thought it was worth a go because a) I was getting desperate and b) nicotine in such low doses is not that risky (7mg patch, worn for 2 weeks).

  I know there’s counter-studies suggesting nicotine doesn’t help with resistance. My experience is anecdotal, but I saw rapid improvement in cognition and fatigue level (particularly post-exercise). My guess is that for some people the particular mechanism behind their long covid is one that this can help with, but not for everyone.

  [1] https://pubmed.ncbi.nlm.nih.gov/36650574/

• by Tade0 on 1/29/25, 11:19 AM

  That's great to hear. I remember Simone Giertz breaking out the bad news to her followers and sounding no less serious than when she was talking about her own brain surgery.

  My former co-worker got COVID twice, as preventive measures didn't fit into his moral framework, and the second time resulted in a mild case of long COVID. I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.

  Long COVID is no joke and seriously affect one's work as well private life.

• by triyambakam on 1/29/25, 7:24 AM

  I would say we don't really know if it's so called Long COVID. I mean that I have taken care of an ME/CFS sufferer long before COVID was around. So it's a set of diseases grouped by their similar symptoms. Autism and ADHD seem similar in that regard

• by jwr on 1/29/25, 1:17 PM

  This is such great news! The best news of my day. She is standing in a brightly lit room and smiling! This is so much better than her condition before.

  Keeping my fingers crossed for a quick recovery!

• by aquir on 1/29/25, 11:03 AM

  I’m following her progress on Patreon and the fact that she’s getting better is great! Can’t wait her comeback video!

• by BargirPezza on 1/29/25, 10:41 AM

  I have been burnt out for almost three years now, was mostly bedridden at first but I can do much more now. I can do moderate training 1-2 times a week, go out to get socialization 1-2 times a week and do much more at home. So it have gotten better, just a very slow pace and it's really hard. You have to learn to know when you have to rest and when to push yourself and that line can be super thin. Not good to do too much and not too little, very hard to read signals imo.

  Hopefully we will see more breakthrough in understanding and reading the signals of the body in the future

• by drannex on 1/30/25, 3:42 PM

  I've mentioned it before on here, but I will do it again, after a COVID infection in '22 (25yo), I was left with complete lung collapse, an infection of the heart, and pneumonia. The doctors were adamant that if I were five years older, I would have been dead before reaching the hospital. After numerous emergency surgeries, a month in the hospital while in the most pain I have ever been in, unable to eat or drink the entire time, and losing the ability to breath on my own for that entire duration - I can't stand the people who suggest to me that covid wasn't real, or didn't cause any problems. It took me six months to relearn _how to walk_ because of it. I was skateboarding just weeks prior to all this. I still can't run, skateboard, or go up a flight of stairs without really feeling it. Some days are better than others. My fatigue levels are astronomical.

  As /u/tunn3l said at the end of their comment: To all ME/CFS and LC sufferers: Don't give up!

• by jjallen on 1/29/25, 9:26 AM

  So great to see and hear. I honestly did not think this was going to improve and expected the worst. Very glad to see otherwise.

  Unfortunately I experienced a similar thing though much milder and shorter last summer.

  Hope we can figure out viruses better soon!

• by stuckindoors on 1/31/25, 1:12 AM

  I had taken care of patients with acute disseminated encephalomyelitis (ADEM) post influenza infection.

  His neuro symptoms included sz, confusion.

  On routine testing by the dietitian he was noted to have a very low vitamin d level.

  Although very anecdotal- I have always believed that autoimmune conditions post viral syndromes are exacerbated by low vitamin D levels.

  Have any you with long covid been tested for vitamin D levels? For any of you did vitamin d supplements help?

• by pogue on 1/29/25, 7:17 AM

  What was wrong with her? Some type of long Covid or something?

• by smallerfish on 1/29/25, 1:00 PM

  Since it hasn't been mentioned yet, I had two debilitating flare ups of EBV (Epstein Barr Virus) post covid. It's commonly latent (apparently 90% of humans carry it) and will opportunistically flare up when the immune system is compromised. It commonly causes mono in teenagers, but more generally will cause crushing fatigue and related symptoms. There are no known cures, but plenty of things you can do to support the immune system. It can be detected with a blood test. If you think you have long covid, get an EBV test - might help.

• by anshumankmr on 1/29/25, 12:31 PM

  my heart skipped a beat reading her name, thought something untoward happened but good to see she is back on her feet, literally. I donated a couple of bucks when that video of her illness came out. Very happy to see she is better now.

• by user568439 on 1/29/25, 9:35 AM

  Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and there are no solutions around. At the same time you are gaslighted by doctors and people because there is no clear diagnosis.

  My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind.

  They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night.

  She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now.

  She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain.

  She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this.

  There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.

• by perching_aix on 1/29/25, 2:57 PM

  Really happy for her. Any details about what resulted in this breakthrough? Checked the video comments / description but didn't see anything.

• by ginkgotree on 1/29/25, 5:53 PM

  I've been following her and rooting for her along with thousands of others, and reading this just now made me smile and tear up a little. I'm so happy for her!

• by cpncrunch on 1/29/25, 9:31 PM

  Here is a site with a lot of long covid recovery stories:

  https://www.longcovidcured.com/

• by mywrathacademia on 1/29/25, 12:03 PM

  I have neurological abd muscular issues after covid

• by nelblu on 1/29/25, 3:06 PM

  Big fan here, just came to say Happy Physicsing :) and get well soon Diana :). Also happy to see her being discussed on HN.

• by clove on 1/30/25, 2:14 AM

  Terry Davis would be pleased.

• by Avlin67 on 1/31/25, 6:33 PM

  she do not look the same

• by 2-3-7-43-1807 on 1/29/25, 12:20 PM

  I'm also experiencing mild but annoying symptoms resembling arthritis and chronic fatigue since my corona vaccinations (biontech/pfizer).

• by garganzol on 1/29/25, 2:58 PM

  We already had deeply insightful discussions on this topic here, but I will repeat for new HN people.

  Covid-19 tends to cause post-viral complications, which manifest themselves as chronic fatigue, body temperature dysregulation, air hunger / shortness of breath with SpO2 of 99%, various neurological symptoms: pain/tingling/numbing sensations in the extremities, parosmia (a distorted sense of smell), parageusia (a distorted sense of taste), difficulties swallowing, cognitive decline.

  According to numerous trials and errors by different people, it was collectively concluded that the condition is caused by some kind of metabolic impairment that presumably affects the ability of mitochondria to produce the adequate levels of ATP. As a direct consequence of that insufficiency, the immune system gets activated and starts to attack body's own tissues. When this happens, the blood vessels start to develop micro-clotting, causing blood flow problems that exacerbate metabolic issues even further. Additional tell signs are increased HOMA-IR and/or triglycerides in the blood work, suggesting that cells of the body cannot utilize the nutrient substrates in full.

  This represents a vicious cycle of a typical post-Covid pathology. The good news is that it can be treated and healed. The bad news is that it may take some time (months, years) and will power, while medical workers around the corner have no clue. The core of therapy consists of a light immunosuppression in conjunction with therapeutical doses of specific vitamins and vitamin-like substances, all being supported with minerals, vitamin-rich diet, good rest, good sleep, mild physical and mental activities every day.

  For those people who still suffering from it, I am putting a link to a site [0] that aggregates some first-hand evidences and research information. A usual note of caution is that every situation is different and you should consult your doctor.

  [0] https://hormonesmatter.com/?s=covid

  Edit: "collectively concluded" is used in the sense that post-covid suffers were able to gain observable improvements in their condition being "a collective of people" suffering from post-covid.

• by _gnad_ on 1/29/25, 7:31 AM

  Love her content, hope she recovers fully soon!

• by MeruMeru on 1/29/25, 8:39 AM

  Happy for her, hopefully her recovery will keep progressing

• by bschne on 1/29/25, 9:29 AM

  :')

• by declan_roberts on 1/29/25, 2:56 PM

  I was expecting some paralyzed person walking but it's just a video of someone with chronic fatigue syndrome standing up.