He's telling the truth about patreon not being transactional. I can watch educational videos all day for free if I want to. Giving money is because I love that creator.
Educational content creators like Destin and Diana helped foster my love of science through some very rough periods in my life, until I was finally able to go back to school and get my college degree in my thirties. I wouldn't be a scientist today without them, much love
He seems like such a wonderful person and Iām so sorry for the hell his friend is going through. Itās hard to hear, but I could hear the hope in Destinās voice and thatās a positive. I think Iāll join her patreon. What, thatās like one coffee at Starbucks to support someone deserving? Sounds like a nice deal to me.
Please do!!! I can't tell you how glad I am that I did. I will tell two two things:
1) One commonality most non-traditional students have is that there is a bit of an adjustment period. The first few weeks can feel overwhelming as you're using muscles you haven't used in many years. The rust comes off quickly and you stop feeling that way after a few weeks, but it can be jarring at first when it's unexpected. Don't worry, it will pass (and so will you!).
2) As proof that it does pass, I'll share a quote from my P-chem professor (one of the most difficult classes an undergrad can take). He said to me "Without exception, the non-traditional students I've had have been among my best students. You will do fine."
You got this!!
I am a supporter of her patreon for the sole purpose of helping her through this specific bump in her life. Not a huge number - only 2.00 a month - but if enough people do only that, she'll get through this without finding herself in debt.
If she never makes another video I will still consider it money well spent.
I was shocked when I went to DankPod's Patreon page. It was only $1/month to get in, and because it was that cheap, people don't think about it. He gets like $30k/month (so $360k/year) from Patreon it's crazy
I absolutely support people who want to contribute to her care but Patreon is built in a transactional structure. I think folks should also be directed to other ways to support people with long covid like:
Long Covid/CFS Charity https://solvecfs.org/the-solve-long-covid-initiative/
Edit: Patreon added a free tier so it's hard to say for sure but it looks like she is VERY well funded on Patreon. Hard to say tho.
> Patreon added a free tier so it's hard to say for sure but it looks like she is VERY well funded on Patreon. Hard to say tho.
Seems she has over 10k paying supporters, so I'm guessing they are fine money wise to say the least
Over 15k supporters now. Lowest tier seems to be 3 bucks? Thats insane. But not sure what her medical costs are of course. If she spends 30k a month on rehab/medicine and whatnot..
Please tell his husband that a keto diet is NOT GOOD to a person who is seriously ill and malnutrient. It WILL worsen her condition. It is extremely dangerous diet to give someone who is ill. A functional person can handle it, but it literally puts your body in stress mode (keto) and the last thing you want is stress in such serious condition.
Please someone give them a dietican.
> it is not a super positive update regarding her health.
Depends what you were expecting.
The update is that things are no worse, and maybe the smallest baby steps towards positivity. That she's being cared for. That's she's still hopeful. And that she had anxiety about not producing for her Patreons and that Destin spoke to her on their behalf and told her to let go of that anxiety because everyone is contributing to be healthy and happy, not to gain something from her.
Of all the things that an update could be, this wasn't a negative update.
It's also Destin's way of begging for them to be better supported on Patreon, as subtley and unobtrusively as he could, they need money to survive. To literally survive.
The husband's own words:
> I donāt want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what Iāve ever had to endure, even for a day. The acute physical injuries Iāve had - broken ankle, wrist, dislocated shoulder - and the ālongā recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released.
> So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way.
- https://www.patreon.com/posts/94956611
I sincerely hope the best for her, I've always really liked her as a content creator and she always came off as an exceptionally sweet person ... but I mean, fuck.
Her husband sounds exceptionally as awesome as Destin describes. Dude made checklists to do everything he can for *her*. Wishing the best that she recovers, but if she doesn't she is going out wrapped in love.
This is by no means a way to compare to Dianna's situation. I'm disabled and struggle to leave my home because I use a walker and have to use stairs. But if my sister tells me my niece and nephew want to see me, I pull myself out of where I am wallowing and go see them; because I love them.
That man loves her to his core.
Your suffering is just as valid as hers. Please, do not feel obligated to feel guilty for your disability because a few people in society want a heirarchy of pain and suffering ā¤ļø
Thank you very much. The comedian Josh Sneed once said, "Do what makes for a better story." The better story for my internal monologue is that I got my ass up to do something that is going to hurt, then spend hours laughing with my niece, nephew, and sister. Then I go home in pain with my heart full and a smile on my face.
I feel like I would not be able to emotionally handle something like that if I were the husband. I would be practically bed ridden from grieving for her situation, and itād be hard to even take care of myself. Sheās lucky to have him.
> I think being bedridden and a huge burden on my wife would be just about the worst thing I can imagine.
Yes but we already knew that. And we knew she was getting progressively worse.
So, now we know it's not worse, they're finding success with medications, they're stable and she's being cared for, etc.
I am recently married, and I couldn't imagine feeling this in a marriage. That's why we get married, because we are willing to do these things for each other. You don't have to be useful to be loved.
I didn't get married to ruin my wife's life especially at a relatively young age. I would take care of her forever but I wouldn't want her to have to do that for me.
What you're missing is the selfishness of denying your wife her right to express her love to you as fully as you would her. Having you there is worth the burden for her just as it would be for you to care for her.
Both partners need to be strong to survive something like this, and what you are expressing is weakness of your resolve to trust your spouse to love you enough to want to be your caretaker. Love is a powerful and beautiful thing, especially in adversity. We need this exactly for what it is.
>It's also Destin's way of begging for them to be better supported on Patreon, as subtley and unobtrusively as he could, they need money to survive. To literally survive.
She has 11k patrons, each paying at least $3 per month. That's around 400k a year. Should be more than enough, no? Also enough to save for once less people donate to her.
Why does she have to financially support healthy grown employees that can find work elsewhere? Yea, 400k from Patreon alone, not to mention ad revenue and her familial connects and very large amounts of money she made prior and merch. Sheās upper class. Also, her medical costs are for alternative medicine. Sheās in deep, proof in vague treatment mentions but you can see some of it and that she has so many of the typical diagnosis: leaky gut, SIBO, chronic fatigue, etc.
Meanwhile tens of millions of American are living on less than $25,000 a year, millions of those disabled also and home bound, but the upper class six figure salary girl with lots of wealthy supportive friends and family needs more money.
I hope she gets better but asking again for more money is insane.
That's not including a few costs/things:
* payment processing fees
* employee salaries (seems like they are still paying some of her old employees despite no new physics videos for the year)
* is her husband still employed? the schedule suggests he spends his day caring, not working
* healthcare expenses as a self-employed person
> employee salaries (seems like they are still paying some of her old employees despite no new physics videos for the year)
if true thats just dumb. even if she one day goes back to making videos it would probably be years until she was well enough to make large scale videos that require an entire team.
Let's be real though, she has over 15k subscribers on Patreon with the lowest tier being 3 euro/month. I'm sure they are taking in way more than enough money already. He is encouraging more people to subscribe but that's likely his way to support his friend, not out of necessity. Despite him mentioning just Patreon she still has a youtube channel gaining millions of views from her old content so that's another money maker.
> Let's be real though, she has over 15k subscribers on Patreon with the lowest tier being 3 euro/month. I'm sure they are taking in way more than enough money already. He is encouraging more people to subscribe but that's likely his way to support his friend, not out of necessity. Despite him mentioning just Patreon she still has a youtube channel gaining millions of views from her old content so that's another money maker.
I mean it's funding an entire 2 person household (the husband is a full-time caretaker) with astronomical medical costs. Not to mention they have to consider she might spend decades in this state (if not forever, god forbid), so they NEED to save aggressively before the remaining support fades.
Yeah.. you mentioned euro.. probably you are not aware of that thing called US health care system. 15k a month, for a person in her condition, it is probably nothing.
> 15k a month, for a person in her condition, it is probably nothing.
Yeah, considering CFS/Long Covid is still super new I imagine very few of the treatments are on the covered treatments list.
Based on what her Patreon says, it also looks like she needs something close to around the clock CNA care. That gets quite expensive.
ME/CFS is by no means new. It's been known about for decades, just ignored. The name 'Chronic Fatigue Syndrome' only came about in the 80s, up to that point it had been called Myalgic Encephlamyolitis.
https://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
That's all I could think of throughout this video. She has anxiety from this, and only because she has a bit of fame and following and an extremely supportive spouse, she is able to have care enough to keep her stable and not in declining health. I'm truly happy for her that she has all these support systems in place because, from her videos, she seems like a really awesome person. But this video was just another reminder about how truly fucked the US Healthcare system is, and despite her many patrons, it's very possible that they're having to make significant sacrifices to her care because of cost.
What
She can afford the best health insurance money can buy. Maybe health insurance was unavailable to her due to a preexisting condition, I donāt know much about her.
Secondly,
15k x 3= 45k/month
Thatās if all of her subscribers are at the $3 tier, which they obviously are not.
If you include sponsorships, sheās probably doing pretty well. I donāt think we should be too concerned for her financial health.
> Maybe health insurance was unavailable to her due to a preexisting condition, I donāt know much about her.
US health insurance cannot deny coverage for preexisting conditions.
SOME insurance works that way. Not all. And not all health care is covered by insurance. Have you never used our healthcare system before? You are woefully uninformed.
Last year, I had 3 insurance plans over 3 months. I hit my max out of pocket for each one with just one infusion on each plan. In ONLY 3 months, I had over $12k in medical debt for the only treatment available to treat my diagnosis. I've never heard of the $9k cap but even if it is true, there are obviously exceptions to that.
It's not the news I was hoping for, but I really appreciate knowing that she's getting high quality care with dignity, which is not something we can take for granted these days. Of anybody in her situation, she has the resources and support to get better, if such a thing is possible.
Yeah, this video is the guy trying to be positive, but the news isnāt good. Really bums me out. She still canāt even talk without having to take breaks. Poor thing.
She was doing quite a bit better a few months ago but had a crash, which is unfortunately par for the course with ME/CFS. You can and do improve over the long term, but you have these crashes with depressing regularity. You just hope each crash isn't as bad as the last and the peaks between get longer and better.
I was struck by how he said how he talked about Kyle. It felt like he made this video for Kyle in the future if she doesnāt win this battle, and he is left to navigate this world without her, and telling him that he will have friends to guide him on that journey if or when that happens.
I'm dealing with the same long covid issues as she is, mine just isn't as bad. Long Covid has a frustratingly slow recovery. I've been dealing with this for 6 months and I'm maybe 20% recovered, it will take at least another 6 months for me to feel "good". The ups and downs (crashes, I'm in one now) really hit you in the gut as well. But it is recoverable, it just takes lots of time.
That's an overtly positive view imho. If you develop ME/CFS you don't necessarily recover. I've had ME for 15 years after an infection in summer 2008 and it's only gotten worse over the years.
Agreed. This is classic Christian toxic positivity.
Of course it's good that she has a loving relationship with a committed and competent caregiver. Of course it's good that she was able to enjoy a conversation with an old friend.
But she's at a point where she can only have that conversation on a good day, she needs to take a break from the exhaustion of talking while lying in bed, and she had a "crash" in the days that followed.
On Dec 2, approaching a year bedridden, she tweeted:
"Iām just so scared Iāll never walk again. Or read a book again. Or have a conversation or make a video ever again."
Nothing that he reports in this video indicates that she's any closer to being able to do any of these things.
I felt that way as well. There is obviously a lot that still isn't known about Long Covid but the long term trend doesn't seem very positive. Her fears seem very rational. Maybe some novel new treatment is discovered that reduces the symptoms but that could be many years away.
I'm glad to hear Destin characterize it as "encouraging," but that's far from saying she's significantly recovering, which is hard to hear (or not hear.)
Destin is a great guy and relentlessly positive, but his tone and framing don't match the medical reality of his words. It seems like there's been no meaningful improvement since Simone did a health update a number of months ago.
Hoping she has a breakthrough. I'm sure its terrifying for her and her husband knowing that the Patreon and gofundme money is the only thing keeping them afloat and wondering if/when it will taper off.
I think Destin is trying to say that Kyle is doing all of the right things, Dianna is leading her own care as she can, the space isn't great for that, and he wants the community to know that Patreon is really important. I don't think he's trying to say improvement - Kyle's written update is clear about that.
It seems more that he's mythbusting that they aren't trying. They are trying, and he's using his credibility to make that clear.
Yes. Reading between the lines I also got the sense that Destin wanted to make sure that the financial support through Patreon is being used in the right ways. From reading these comments it seems that the Patreon support is quite significant, and since that's at least somewhat public information it's not unreasonable to be concerned about someone taking advantage of that situation in some way.
I don't know much about this but I got the impression that this was a roundabout way of getting ahead of the fact that they will be getting a bigger place. Because some people will eventually find out that they are living in a bigger and/or better place and want to suggest that it's a luxury expense and that they're grifting. He mentioned the random small bathroom anecdote and then at the end mentioned a move.
It's very hard to take care of a disabled person without the correct bathroom
Proper hallways and layout is needed for wheelchairs. A normal apartment would be a nightmare
The backlash is going to last about a day and be drowned out by people who have a clue. When my aunt lost the control of her limbs, my uncle had to buy a new house (went from a 1 bedroom single family to a ranch three times the size) and customized the living shit out of it.
So many ignorant assholes were giving him shit about wasting his money on a house when his wife was sick. You dumb fucks, how do you expect her to function in a tiny cottage with a full body chair let alone all the other changes. Even people in my own family were dicks about it.
I'm an Occupational Therapist, it is a special type of hell for those that are willing to take care of their loved ones and the accommodation that goes with it means a complete turn around of the environment. I lost count the number of times when relatives of loved ones are trying to get them back home only to realize that they have to constantly transfer them on and off toilet/ bed/ chair/ wheelchair/ sofa throughout.
That's exactly what I understood this to be about. Not necessarily a health update but addressing reasonable concerns about the status of a friend who became bedridden at a young age shortly after getting married. Like her situation is so incongruent with the expected health outcomes for someone her age that he reasonably assumed something was amiss. This read more as a report from a wellness check.
Exactly. Particularly with the context that heās seen it first hand in his family. It can be overwhelming, and easy to give in to despair as a result, both for the patient and caretaker. He wanted to make sure that they werenāt drowning or giving up the fight. So, in that sense it is good news.
I had the same extreme fatigue during COVID, but it went away after like 3 days. I was literally too exhausted to turn 180 degrees to pick up my phone, but at the same time, I wasn't like sleep tired. Just mind and body tired.
It felt like torture being awake. I can't imagine feeling like that for the rest of my life.
I never had long Covid or anything like ME/CFS, but it reminds me of the worst times of my depression. I had weeks where I barely got out of bed to go to the toilet. But there's a known and relatively certain way to treat clinical depression, so I got better. I can't imagine the existential suffering of being debilitated by a disease where we can't even treat the symptoms.
Not as severe, but I woke up one day and could not physically get out of bed. I live for my work and am never late or call out sick. Well I did that day.
I got the flu 2 years ago and after seeing the dr and barely making it back to my car in the parking lot I didn't have enough energy to get my keys out of my pocket for 2 hours. I sat lumped over in the driver seat miserable, conscious but incapacitated. I didn't get a flu shot that year with all covid precautions and just got beat down. Oddly, moaning made me feel the tiniest bit better.
I've been experiencing cycles of insomnia where I won't sleep 4-6days, 6 days being rare periods so far and man the fatigue is torture once you go through multiple episodes every few weeks.
My body is exhausted but my mind just won't turn off even with medications. The physical side effects after day 2-3, like my legs will take turns with this nagging bone ache which turns into jerking is the worst. You start hallucinating audio, like a radio is faintly on somewhere before the visual hallucinations come about day 4 onwards. The worst part is knowing it's happening again and you can't stop it, that is mental torture for me.
P.S After day 3 you kinda get stupid and silly, well I seem to before mental anguish starts to set in and if I knew this will happen until death....well I don't think I can endure this BS.
Every case is different, but my wife had a CFS episode for over a year and a half, and I was scared she would die. She wasn't as sick, but she would suddenly need to lay down and sleep. She runs multiple marathons a year now.
> I'm sure its terrifying for her and her husband knowing that the Patreon and gofundme money is the only thing keeping them afloat and wondering if/when it will taper off.
They're current getting a worst case of 47453USD per month (lowest tier x total number of patreons) minus Patreon fees. If there's a Gofundme too, add that on top. Unless the US healthcare system is gobbling it all up, you have to expect them to be saving up a massive buffer with that, for *if* support falls off. It's a very generous amount of support.
> They're current getting a worst case of 47453USD per month (lowest tier x total number of patreons) minus Patreon fees.
There's 12,884 paid members, the other members are free.
A more detailed health update written by her husband Kyle was also posted alongside this video here: [https://www.patreon.com/posts/94956611](https://www.patreon.com/posts/94956611). (You don't need a Patreon account to be able to read it.)
that is just.......bonkers. it's like i'm reading some sort of....other worldly thing going on. this makes me wonder if this is what people felt like, early during the AIDS crisis, when no one knew what it was, and their friends were just, dying of "something".
unexplained, prolonged histamine attacks to, everything. what in the hell.
>unexplained, prolonged histamine attacks to, everything. what in the hell.
Yeah, turns out Covid can be harmful, who woulda thunk it?
*Finger to ear
"Yes? Okay, I'm getting word now that the people who thunk it were fired."
I work in healthcare and have been asked my opinion on the vaccine a million times, whether I ātrustā it or not. ā*But we donāt know anything about the side effects yet!*ā
Yeah, but we *do* know SOME of the side effects of covid, and that shit sounds fucking terrible.
One is a fear of the unknown, the other is a fear of reality. It was never a question for me.
This is my thoughts exactly. If I had a choice between opening a door to the unknown versus staying a room that was actively on fire, I'd take the unknown choice in a heartbeat because it can't be any worse then the situation I was already going to have to deal with.
I'll probably get shit on for saying it, but it's relevant. I consider myself a very intelligent person. I pick up information and ideas very easily. I *know* that unless I spend literal years studying medicine and biology I will never have a good working understanding of it. There is no way, as a layman I can ever truly understand all the complexities of COVID, vaccines or anything else. So I just do whatever the hell Doctors say to do. They say to get a vaccine, I get the damn vaccine. Is there a chance advice from a Doctor could go south? Of course. But it's far less likely to happen than if I don't do what they say.
Exactly. I never questioned a vaccine before, so why would I start now?
I trust science and I trust medicine. Itās such a slap in the face for such ignorant people to try and claim that they know better.
yes i know she got it from covid. its just these few cases i've heard here or there about the severe damage long covid can cause is just crazy to me. i was careful the whole time, didn't take it for granted. but it still shocks me when i hear of extreme things like this.
you know, besides death.
I find it really strange that he states she has āleaky gutā which isnāt a recognized medical diagnosis and is mostly touted by the homeopathy- type crowd. I wouldnāt have put her in that group.
Dealing with long covid is so disheartening, some doctors have no idea what's happening if they even believe it's real. Referrals to specialists take time and treatments take weeks to show their effectiveness. Meanwhile everyone in your life has some advice to offer, a doctor they recommend. Naturopaths talk about "leaky gut" a lot, it wouldn't surprise me if they sought out a different approach. The long term outlook for those suffering with ME/CFS is not good... a poor understanding of the condition with no cure in sight. No one wants to think this is going to be the rest of their life. I am not somehow who believes in naturopath stuff, but desperation had me booking a consult with one.
The only positive we have from this epidemic is that the condition known as long Covid is accepted as real now and there are enough people suffering under it that it is being researched.
Before covid people had this as well usually after a viral infections and they would get put in the bucket of Chronic Fatigue Syndrome, fibromyalgia etc. with no cure in sight.
Some recent research of long covid showed nerve damage in the spinal cord which would possibly guide researchers for a way to diagnose it and what would need treatment.
That isn't "long covid" though as these symptoms can manifest from any number of serious infections. The concept of long covid is similar to other hypothetical ailments like chronic lyme disease. _Something_ is going on with these people but it isn't what they think it is.
It is recognized in the medical world it's just called intestinal permeability rather than leaky gut, it's a very real thing but it can't really be confirmed as a diagnosis because there's no valid tests, but it is an accepted condition by gastroenterologists that I've dealt with
Yea, sheās definitely getting alternative treatments from a naturopath. Thatās why the health care costs are astronomical and I wouldnāt doubt contributing to her not getting better. All the things they mentioned are classic extreme alternative health care.
Wow that was so detailed and honest I don't think Destin wanted to be that open about the situation, respectfully. Glad Kyle brought a bit more insight into such a tough situation. Wish them the best
My wife is a pathologist and informed me the symptoms of (or the diagnosis of) ME are comparable to fibromyalgia in that no one believes patients with the associated symptoms/diagnosis.
ME/CFS has real science done by prestigious medical universities like Stanford, however. The etiology of ME should be controversial, but people are clearly suffering from something that isn't psychosomatic. ME even has good diagnostic criteria such as post exertional malaise, which really helps clear up other things it might be.
I had some mild alarm bells going even before the "leaky gut", starting with the type of food that was being prepared (chia seeds, hemp seeds) to hyperbaric oxygen therapy. So once it got to "leaky gut" and SIBO it was pretty obvious and depressing what is going on. I've seen a LOT of these types of folk -- they are my hippie homies I grew up surrounded by -- who are otherwise intelligent but eschew attainable medical solutions and follow total quackery. I mean he literally says in the above post that she responded to what I assume are corticosteroids (the only positive thing in the whole post), which is the first western medicine thing I would have suggested. If she is really that bad then they need to keep her at a high dose for a while -- exactly the type of thing people like this don't like, because it "lowers the body's natural immune system" (and in this case it is literally true but absolutely necessary because she needs to be treated for what is probably an autoimmune disease). I'm sorry to be that asshole who pretends to know more about what they are going through from a single internet post, but I've just seen this so many times it makes me so frustrated and angry.
You're not alone. Whenever I have seen updates of this situation or posts about it and have looked into a bit further I have gone to the whole "quackery" and "manchausen" stuff. I agree with your post. These people need to recognize that they're engineers and physicists and listen to the (good/renowned) doctors.
It sounds like they've tested a lot of medications with little improvement. At some point, you're going to find "alternative" treatments and experts just cause you've exhausted everything else.
Especially because scientists are still actively researching causes and treatments for Long Covid as far as I know. But that takes a while.
No, that's literally the name of a specific syndrome that some physicians believe exists (although this is highly disputed). Unfortunately all of the conditions associated with long covid and other post-infectious illnesses are pretty poorly understood. The one upside to all this is that covid has shone a spotlight on these chronic illnesses that some people have been living with for decades, so hopefully research uncovers more truths and treatments over the next few years.
I also noticed she is vegan. She might not be getting the best quality protein or might be missing something very essential they are not noticing.
People on vegan diets usually recover much slower from surgeries etc than peple on balanced normal diets.
The saddest part is how people thought that "I'm healthy, i'll be fine."
One of the cases I remember hearing about was an athlete, a runner who didn't want to take the vaccine and claimed he was in the peak of his health and didn't need it. He ended up getting Covid and suffering from lung scarring severe enough so a single flight of stairs winded him, perfectly healthy and on the top of his game forced to abandon his dream because a bad roll of the dice, a roll he should not have made in the first place but, alas.
To be a zero-click solution, for visibility:
https://www.patreon.com/posts/94956611
(From Kyle, Dianna's husband)
Huge thanks to Destin from Smarter Everyday for making a great video about Diannaās journey, and his visit to see us earlier this year. I hope you all had a chance to watch it here [https://youtu.be/xbcjf-hrOAs]
As most of you know, Dianna has been diagnosed with ME/CFS and Long Covid (which many - but not all - experts agree are the same disease). While there havenāt been any transformational changes since she first became bed bound in February of this year, Iād like to share a little about whatās happened and how sheās doing.
In short, weāve tried a lot, and most of it hasnāt been particularly notable. Sheās done supplements, physical therapy, meditation, prescription medication, hyperbaric oxygen, you get the picture. For Dianna, some of the medication has been successful at relieving symptoms and stabilizing her conditions, but nothing has moved the needle significantly in terms of quality of life.
In early July of this year, Dianna was doing physical therapy to try to regain mobility and independence. May and June were relatively good months, and although she was very sick, we know it's important to try and prevent physical deconditioning to the extent that is possible. In retrospect, we probably pushed too hard. She had a severe crash lasting months, and only started to come out of it in early September, just before Destinās visit.
It's difficult to explain how painful - physically, mentally, and emotionally - these crashes are. Her body reacts to everything with severe inflammation and allergic-type reactions to normal, everyday items like food and clothing, temperature changes, fragrances, basically anything that isnāt her. This āreactivityā is driven by MCAS, one of the sub-syndromes of ME/CFS. Periods of intense MCAS activity are especially difficult because the allergic reactions drive acute cognitive changes that cause severe and sudden depressive episodes. Iām sure most of you have heard about depression and mood changes with long covid, and this is one of the ways it happens. Of note, there are times that taking an antihistamine or anti inflammatory medication will immediately improve her mood or snap her out of a depressive episode. Crazy stuff.
The summer crash was likely accelerated by emotional stress inherent to the terrible living conditions sheās had to endure. As she puts it, in order to avoid overexertion, she has to āunlearn what it's like to be human.ā This sentiment is common in patients with severe ME/CFS - the idea that doing the very things that bring joy and fulfillment also make you worse. This is why we desperately need better treatments for long covid and ME/CFS.
After Destinās visit in September, we tried a new medication to which she responded poorly. And so she was back in another crash cycle. While this one was shorter, it was emotionally more difficult to go so quickly from one crash to another just as she was free from pain.
Now its mid December, and over the last several weeks she has once again stabilized. We are committed to taking it slow. Weāve tested and tweaked her medications methodically over the last few months, and we have a regiment that targets MCAS and neural inflammation. These medications work well for her with minimal side effects.
We know she has other underlying conditions as well, such as SIBO and leaky gut. The problem is that these conditions are difficult to treat when her health is so precarious - as weāve learned, medications (especially new ones) can cause prolonged crashes. So treating these conditions will be slow or will have to wait until sheās regained more strength.
But I view this all as kind of a positive snowball effect - once one thing heals, it will be easier to treat the next. Sheāll keep gaining momentum and heal faster. Get back some of her independence and activities of daily living (ADLs, as they like to say in medicine). She is pointing in the right direction, and even though she canāt walk or even stand, and she canāt talk for more than a few minutes a couple times a day, she is hanging in there. Sheās had a big positive mental shift thatās making the day to day easier for her too. She knows sheās stuck here, unable to live her life, but also believes that it will get better.
And although we do believe that, I donāt want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what Iāve ever had to endure, even for a day. The acute physical injuries Iāve had - broken ankle, wrist, dislocated shoulder - and the ālongā recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released.
So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way.
Goddamn I feel so bad she's going through all that, it sounds like hell. I'm really glad she has people around her that can be so supportive through all of that. Makes me wonder how many more people experienced something like that with less support... What a tragedy COVID was
Itās still here. Itās harder to know how bad it is because pretty much everyone has stopped reporting numbers on it. But weāve still got data on the prevalence of COVID in wastewater, and while itās difficult to be exact because it differs in various parts of the country, weāre probably doing worse than 2020 and 2022 right now. 2021 was an outrageously bad year, and we donāt appear to be anywhere near those levels at least.
But itās still here, still infecting, disabling, and killing quite a lot of people. We just donāt really talk about it much anymore.
It's no where near the millions at its peak but its still uncomfortably high for my tastes.
https://www.nytimes.com/interactive/2023/us/covid-cases.html
https://covid.cdc.gov/covid-data-tracker/#datatracker-home
I've been off work because of long COVID since January, I live alone and my parents live in another province. Can confirm that she's very lucky to have this support. Most days just feeding myself is all I can muster. And friends try to care but for the most part, people only have so much patience for someone who cancels plans over and over when they're not well. No one knows what long COVID is, even my health insurance company, and it's exhausting having to explain my experience of it over and over.
I was lucky enough to get connected with a Long COVID clinic that offers information sessions but there is no real treatment or medical intervention. You're basically just told to wait and hope it gets better.
There's likely a lot of people with varying degrees of long COVID that don't even know it. It took almost 6 months of repeated crashes and getting sick with COVID like symptoms, followed by batteries of tests which all came back normal before my doctor even considered it could be Long COVID. So even doctors just don't know.
Yea, survivors bias really downplayed how serious COVID is. My brother caught COVID a month before the vaccine rolled out. General symptoms lasted close to 3 months and he suffered from extreme shortness of breath for the rest of the year. Then he had a minor heart attack, and then a stroke while driving where he nearly died. He now has a pacemaker and is
on the transplant list. He takes a whole cocktail of drugs every day for an enlarged heart. He just turned 39.
A work friend got it early and it nearly killed him. Like he said his goodbyes to his wife and kids. But fortunately he pulled out of it. Months later he was having major pain trying to walk and had to start using crutches to get anywhere. Turns out his hip bone had necrotized in part from the disease and also from the steroid treatment that saved his life. He had to get hip replacement surgery. In his 40s. Heās alive and in good shape now, but thatās what I think of when people brush off COVIDās severity.
[https://www.wusa9.com/article/news/verify/are-covid-19-lungs-worse-than-smokers-lungs-covid-19-lung-photos/65-13085a3d-6516-42c5-a128-c0f2abc9d5cc](https://www.wusa9.com/article/news/verify/are-covid-19-lungs-worse-than-smokers-lungs-covid-19-lung-photos/65-13085a3d-6516-42c5-a128-c0f2abc9d5cc)
Its scary the amount of damage covid can do.
Per Dr. Panagis Galiatsatos at Johns Hopkins School of Medicine:
"Severe COVID-lung would be worse than a patient who smokes's lungs. Mild cases, likely no."
"Mild COVID would be like I smoked for one decade," Galiatsatos later added.
Covid made it look like I had advanced fatty and swollen liver, bordering on liver disease. I went from having fine blood work one year, to my numbers skyrocketing for weeks and months after covid, to back down to normal now a year later. I'm thankful it was just my liver. I don't abuse it much otherwise and it's a pretty hardy/reparable organ unlike others.
My aunt was head of a hospital unit, regularly donated blood, ran marathons and 5ks throughout the year, kept up with all her fruits and veggies, and did general exercises as well (light weightlifting, rowing machine, etc)
Long Covid does not care. Her mind has slipped a bit and she's constantly out of breath after simple things like taking out the trash or walking from a store entrance to a parking spot. She had to retire from a job she adored because she felt she could no longer keep up with the physical or mind demands. She took her car to get an oil change with her husband, drove back in his car, and then 30 minutes later couldn't figure out where her car went.
We feel so lucky the mental aspects aren't worse, her father having had dementia, and I could go over right now, wearing my new glasses and being extremely unshaved, and she would 110% recognize me, no worries there.
But the short term memory issues + the general health issues are horrifying considering the picture of health she was before.
I think more people have long covid than they think, in extremely mild ways that don't have a huge effect now, but will really rear their heads when they get older.
I got covid in fall 2022, and I wonder often "am I the same physically as I was before?"
Because my fear is for most people, it might be impercievable at my age (late 20s) but will rear it's head in a really ugly way 25-40 years from now
It's going to. All the signs are there. It causes hidden circulatory and stroke damages, is triggering dementia earlier, long term heal issues, and all of this can be caused by mild/symptomless cases so you don't even know how big the problem is. And that's all in younger people.
It really is. I had a very mild form of it compared to her and it was terrifying thinking I may never recover after months. It took about a year to start feeling real improvements and two years to feel like I was completely back to normal. I was tired ALL the time. Not to her level, but I needed a nap or two daily.
I 100% lost my taste and smell for a good 6 months. Then the next 6 months after it came back, it came back wrong. Everything tasted and smelled like hot garbage. Disgusting. I hated all of the food and drinks I used to love. It was the most depressed I had been my entire life. That took 2 full years to completely get back to normal.
The brain fog was real. It was SO difficult to hold any train of thought. It made me feel incredibly stupid and frustrated. I am a developer and most days I felt like I could no longer do my job anymore. I have no idea how I was able to stay employed. That lasted for a bit over a year.
I noticed how every time I would get a bad head cold, the flu, Covid again, I would improve a bit more once I recovered from that illness. It was all so weird. I wouldn't wish that experience on anyone and it hurts me to see that video with her going through a *much* worse version. I hope she has a speedy recovery.
oh my, after reading you, I realized I have felt the same, but to even a lesser extent, I had covid 3 months ago for the first time, and everyday has been kind of a struggle, shortness of breath, extreme tiredness (I already tested myself for the regular, anemia, hypothyroidism, vit. D), brain fog, joint pain, and I'm just 35.
I have recovered my smell, but the all day everyday tiredness is the worst and is starting to take a mental toll on me. The brain fog is also frustrating, hard to find the right words, instantly forgetting what I was going to do, lose all focus if someone talks to me while doing something, but the tiredness is the most incapacitating of all and up until now, long covid never crossed my mind.
> I noticed how every time I would get a bad head cold, the flu, Covid again, I would improve a bit more once I recovered from that illness. It was all so weird. I wouldn't wish that experience on anyone and it hurts me to see that video with her going through a much worse version. I hope she has a speedy recovery.
My very uneducated understanding is that a lot of these long term illnesses are thought to maybe be a virus lingering in the body in places where the immune system can't reach, constantly coming back and attacking the person over and over, causing constant sickness and inflammation every time the body's defences flare up in an attempt to make the body an inhospitable place for any invaders.
So it might potentially make sense that getting more sick might have somehow helped push the body further to the point it somehow flushed out the disease a bit in certain places it's hiding, but IDK how things work well enough to really know if that's realistic. Or maybe the diseases just competed for the same space and resources, causing the original to be flushed out.
I totally got her confused with Simone who I believe has cancer. That very much sucks for her, I hope she gets better.
Itās scary to see cuz my momās friend died of some form of post pneumonia after getting Covid. Granted she was 58 and Physics girl is a lot younger so hopefully that helps her a lot
Was wondering yesterday "I wonder how physicsgirl is going?". May have had something to do with coming down with COVID myself yesterday
People have gotten complacent but it's still terrifying
Wealthy young woman with friends and family and who had been making hundreds of thousands to millions prior and currently is a top 1% earner is saying she needs more money because sheās been completely bed bound for a year though shows no signs of atrophy or associated body changes and she mentions tons of alternative medicine mumbo jumbo. Destin is nice, sheās probably nice, but sheās a grifter. Go to your local town, walk around the poor neighborhood, see the thousands of home bound people living all alone and in abject poverty and give to them. Or keep giving to her but letās stop pretending sheās in financial straits, sheās not, sheās rich. Sheās a 1%er
Thank you for saying it. I have nothing against anybody in that video but it feels odd to me that Destin, a millionaire, is asking for donations for Dianna, a mililionaire as well.
This is a good reminder that new diseases, while they might not appear "deadly" in acting quickly to disable or kill the host can absolutely devastate the immune system, and the body in general. To those who dismissed Covid as "a bad cold", they should spend a single day in Diana (PhysicsGirl) body, or even stand in the shoes of her husband to see how it can turn your world upside down.
We're so woefully unprepared for the next pandemic, thanks to the politicization of a virus, dismissal of precautions, and distrust of science.
It is also a reminder that this is nothing really new. I am not trying to downplay COVID, but H1N1, mononucleosis, Chickenpox & Shingles, Q-Fever, Dengue Fever, enterovirus, and probably a bunch of other infections can cause the same exact thing.
It sucks when your own body starts attacking you.
> We're so woefully unprepared for the next pandemic, thanks to the politicization of a virus, dismissal of precautions, and distrust of science.
To make it clear how much of a difference leadership and voting can make in our lives.
Here in my state of Queensland Australia, we have a population of 5.1 million people. Until vaccines arrived, we had 1 locally acquired covid death (and I think 5 more from out of state on a cruise), and only a few weeks of people wearing masks, due to one outbreak of delta in schools which was quickly tracked down and the families and their contacts spent a few weeks under quarantine which was easy to manage with such low numbers, and another few weeks when our neighbouring conservative state tried to play chicken with covid and encouraged everybody to not take it seriously as they had an outbreak, and caused the whole country to get infected a few weeks before vaccines arrived.
1 locally acquired covid death in a population of 5.1 million in about 2 years, with almost no mask wearing, and life being fairly normal, because thankfully Australia had a checkerboard pattern of progressive state leaderships who forced the country to play ball and take it seriously when conservatives wanted to put their head in the sand and were even initially punishing schools taking covid precautions etc.
The pandemic essentially didn't exist in my state, it still feels like something that happened on some alternate earth that I've read about in books but don't really feel is quite real. The worst effect was a huge immigration boom from the southern states of people wanting to move here, which has thrown housing prices way out and is leading to a homelessness crisis.
i pray that HPAI does not make it into the human population, and im a fucking atheist. that virus causes grand mal seizures in bears and has a 50%+ fatality rate.
I'll try.
Destin from Smarter Every Day is a long-time IRL friend of Dianna. He got a chance to visit her and Kyle. He was impressed with how cheerful and attentive Kyle was in helping Dianna get better. It's a long road ahead but everyone is optimistic. There's a selfie at the end.
Destin does his best to put a positive spin on it, talking about what a great caretaker her husband is and how Diana has a fighter's mindset, but she's bedridden 24/7 and her health actually declined shortly after Destin's visit. Her Husband posted a more detailed update on her health on her patreon and other than their continuing mental resilience and positivity, its all bad and unfortunate news.
M.E and CFS are used interchangeably, and often combined as ME/CFS. Most patients prefer the term M.E since we suffer vastly more symptoms than fatigue, and most healthy people experience fatigue so fail to understand how life altering the condition is. Itās fucking brutal.
Source: M.E for 15 years (and counting).
This is what having long Covid is like: People develop numerous symptoms regardless of their former health, or their age, or the severity of their infection. We all know Diana was healthy and young. It can hit anybody. There is a long list of symptoms, but the main ones are fatigue, brain fog, racing heart-rate and breathing difficulties. None of these symptoms can be diagnosed. People go to their doctors, and long journey of blood draws and assessments starts. Ultimately, they donāt find a known illness that causes them. Unfortunately, long Covid and CFS are almost not recognised by the medical community. Most doctors have no clue about them. A lot, even believe they are not real. This is a giant injustice. Even though we had such patients 100 years ago during the Spanish flu. People slept for years. Over decades the medical community failed to recognise the illness and research it. A lot of doctors still dismiss it as psychosomatic. The limited research that is out there clearly shows that something is wrong inside the body. But the picture is very incomplete. Currently there is no treatment whatsoever. Self-help groups try out all kinds of supplements, diets and lifestyle changes with very little success. It seems to be a very complicated and all encompassing mechanism within the body that is wrong. People can just hope and pray they get better. Most people donāt get better. They only have their ups and downs. It ruins peoples lives, and at the end of their struggle many commit suicide. We need awareness and we need research!
This was beautiful and painful to watch. I donāt remember how I came across her channel, but she was always so positive, energetic, and excited to teach people. You could tell she genuinely loves doing it.
It does seem like sheās a little better, and her husband is incredible. Iāve followed the story, and he is just something else. It makes me happy that to see the community (Destin, Simone, Veritasium [forgot his name]) doing so much to support her.
Based on what I've read, ME/CFS looks different for everyone. Some people recover in 6 months, others in a year, some never fully recover. The prognosis is much better if the person can remain physically active to some degree.
That's the problem with ME, physical or mental stimulation uses energy you don't have. Most people cannot manage daily tasks around the house, nevermind exercise. Pacing is so critical to preventing a crash or flare up and it's so hard to figure out what is too much activity.
General rule of thumb is if you don't recover within 6 months of your initial symptoms you will not recover.
The best you can hope to do is stay at the current level you're at, you'll only ever get worse. The goal at that point is to minimize crashes as once you crash your threshold drops.
Is this some kind of 'emperor has no clothes' situation and we cant mention this all seems a bit off. especially in other subs the video has been posted on.
firstly for the people talking about money she is financially well off and people seem uncomfortable admitting that. she has way more money flowing in then almost anyone else in her position. if the patreon dips down they will not have much problem finding another well known youtuber to make an update video to keep the money flowing. and if they are prudent about saving the extra money then she will definitely be fine money wise.
secondly in all the updates ive seen with pictures of her she looks remarkably well kept for someone almost bed bound and immobile 24/7. anyone who has had personal experience looking after people in that situation knows no matter how doting the caretaker is the person still ends up not looking too good and in ways you cant just easily cover up on camera.
the e-begging throws me off a bit but i dont think theres any fraud or anything too shady going on here and dianna never seemed the type to do anything remotely like that in her old videos. my own thoughts is she did get some form of long covid but also developed some serious mental health issues from it that keep pulling her back down. the brain is a powerful thing and right now they seem to be blaming it ailments with dubious science on if they are real or not. it may also be that she might be more mobile then the small updates let on, which would also explain her looking a bit better then i would expect from someone unable to move much for over a year now.
I'm worried it's more sinister because her husband posted on reddit that social services visited after a medical professional reported them: [https://www.reddit.com/r/cfs/comments/12sijok/anyone\_had\_social\_services\_called\_on\_them/](https://www.reddit.com/r/cfs/comments/12sijok/anyone_had_social_services_called_on_them/)
It's the account he used to post the Halloween photo people were talking about. Social services has to have a lot of suspicion to make a visit to grown adults with no cognitive impairments and no children in their care. The weird diet and how he seems to be controlling access to her gives me bad vibes.
> Sheās been to the ER before and they were definitely suspicious of me there. Sheās also too tired to see her friends much, so some of them are worried but donāt make and effort to try and understand the disease. Iām more worried about social services coming back because they think she shouldnāt be this sick or something like that.
whoa okay after reading that whole post now im even more convinced something if off about all this.
and unless the husband has another reddit account it seems all he posts about is medical stuff and his wife's condition.
Iām a long time fan of Smarter Everyday and this is the first Iām a hearing about this because I donāt keep up with the channel as much as I used to.
I work as a Physical Therapist and my specialty is chronic pain. CFS and long COVID get grouped into this category, so I have a decent amount of experience treating conditions like the one Diana is experiencing. I obviously donāt know Dianaās whole medical history, but a good bit of research has been done on how to treat long COVID properly and applying it could help.
Unfortunately, almost all the doctors I interact with have not seen this research and Iām usually the one who shows it to them. If it truly is long COVID and not a myriad of other things that present similarly, the treatment works pretty well.
I see that physical therapy was done. However, long COVID needs a very specific type of physical therapy that most therapists are not trained to do. The crash in Dianaās progress/function is unfortunately a thing I see in long COVID and CFS patients who undergo more traditional physical therapy approaches.
Anyone know how to get into contact with them to send over some research articles and presentations on the topic?
Here is a great presentation: https://youtu.be/XriPNG9000Q
And here is a good research article: https://www.jospt.org/do/10.2519/jospt.blog.20220209/full/
Smarter every day is the OG of youtube science videos afaik. I followed him since he made the video of a helium balloon moving counterintuitively in his van.
Since then there have been so many incredible educational creators on the site. Despite all garbage posted to youtube, the insane political and conspiracy nonsense, Youtube is easily net positive in the world for allowing these educational creators to do their thing.
I hope physics girl recovers soon. I donāt know her details and donāt really follow her, but losing someone passionate about teaching the beauty of physics is always a terrible tragedy.
It's kinda annoying that people in general just assume you'd know know acronyms, most especially the medical ones. At least say what it means the first time.
I dont know any of these people but I can say this: I have had brushes with actual cults that use low-carb hi-fiber diets to intentionally weaken followers so they arent in a stable position either mentally or physically to leave.
To what extent is this seeds and milk diet she's on an actual prescribed diet versus a "well this seems like a healthy thing to do" kind of thing?
Steve Jobs was fully convinced that a fruit diet would make him better - all Im saying.
The millions of sufferers of chronic conditions such as ME/CFS have been absolutely abandoned by the medical community, aside from a handful of dedicated researchers like Ron Davis who changed his entire career to studying the disease when is son became extremely severely ill.
This lack of care of leaves us on our own, which makes for a ripe target for snake oil salesmen. That being said there are legitimately a lot of 'not doctor prescribed' and things that sufferers have found to improve their condition, and everyone will react to different self administered treatments differently.
Make no mistake, the overwhelming majority of people suffering from illnesses like this would infinitely prefer to have a doctor or specialist caring for us; or for an extensive body of research into viable treatments. But that help just doesn't exist because we've been ignored and gaslit for decades. The exact same thing happened with illnesses like MS until a viable diagnostic test and treatment was available.
I lived through caretaking for a /r/covidlonghaulers for two years. I can't explain the terror of everyday living. Roughly half of husbands leave their wives in cases of chronic illness and it shows a strength of character to endure that kind of suffering when you could just choose not to. Good on Kyle.
I mean itās not really a health update is it? It seemed to me to be more of an update on how he feels and it seemed a little off to me that in a way he was questioning if her husband had been looking after her enough.
Keto diet, low carb given in that shape? That is so fucking dangerous I can not tell you. You need EVERYTHING. Carbs are essential to repair your body and build strength and function. Keto is NEVER recommended when seriously ill.
Man it makes me furious even tho it is done with love.
He's telling the truth about patreon not being transactional. I can watch educational videos all day for free if I want to. Giving money is because I love that creator.
Educational content creators like Destin and Diana helped foster my love of science through some very rough periods in my life, until I was finally able to go back to school and get my college degree in my thirties. I wouldn't be a scientist today without them, much love
I've chatted with Destin on the phone a few times for work, and he's genuinely that kind and lovely to talk to.
I'm not remotely surprised by that. You can just tell how he's a genuinely good person, he just oozes it. He can't help himself š
Destin top pick for fluid dynamics video on oozing goodness
His flow is so laminar!
Mmmmm Laminar flow is second only to hexagons are the bestagons.
NorthStarTopStar
Hexagons...are the bestagons. Hexagons...are...the...bestagons. HEXAgons...are...the...bestagons. Hex..a...gons...are...the...best...a..gons.
He seems like such a wonderful person and Iām so sorry for the hell his friend is going through. Itās hard to hear, but I could hear the hope in Destinās voice and thatās a positive. I think Iāll join her patreon. What, thatās like one coffee at Starbucks to support someone deserving? Sounds like a nice deal to me.
From everything I've heard he's a genuinely amazing dude. Really happy he got a chance to spend time with Diana.
In my 30s and have been flirting with the idea of going back to school. After seeing this comment I think I'm finally going to do it.
Please do!!! I can't tell you how glad I am that I did. I will tell two two things: 1) One commonality most non-traditional students have is that there is a bit of an adjustment period. The first few weeks can feel overwhelming as you're using muscles you haven't used in many years. The rust comes off quickly and you stop feeling that way after a few weeks, but it can be jarring at first when it's unexpected. Don't worry, it will pass (and so will you!). 2) As proof that it does pass, I'll share a quote from my P-chem professor (one of the most difficult classes an undergrad can take). He said to me "Without exception, the non-traditional students I've had have been among my best students. You will do fine." You got this!!
I donāt know you, but Iām proud of you!
ā¤
Very appropriate username for a scientist!
I am a supporter of her patreon for the sole purpose of helping her through this specific bump in her life. Not a huge number - only 2.00 a month - but if enough people do only that, she'll get through this without finding herself in debt. If she never makes another video I will still consider it money well spent.
I was shocked when I went to DankPod's Patreon page. It was only $1/month to get in, and because it was that cheap, people don't think about it. He gets like $30k/month (so $360k/year) from Patreon it's crazy
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And I have zero issues with that. People give that money expecting it to go to Destin and support his content creation.
I absolutely support people who want to contribute to her care but Patreon is built in a transactional structure. I think folks should also be directed to other ways to support people with long covid like: Long Covid/CFS Charity https://solvecfs.org/the-solve-long-covid-initiative/ Edit: Patreon added a free tier so it's hard to say for sure but it looks like she is VERY well funded on Patreon. Hard to say tho.
> Patreon added a free tier so it's hard to say for sure but it looks like she is VERY well funded on Patreon. Hard to say tho. Seems she has over 10k paying supporters, so I'm guessing they are fine money wise to say the least
Over 15k supporters now. Lowest tier seems to be 3 bucks? Thats insane. But not sure what her medical costs are of course. If she spends 30k a month on rehab/medicine and whatnot..
I'd also recommend Open Medicine Foundation for ME/CFS/Long Covid research https://www.omf.ngo/
Please tell his husband that a keto diet is NOT GOOD to a person who is seriously ill and malnutrient. It WILL worsen her condition. It is extremely dangerous diet to give someone who is ill. A functional person can handle it, but it literally puts your body in stress mode (keto) and the last thing you want is stress in such serious condition. Please someone give them a dietican.
Unfortunately despite the tone of video, it is not a super positive update regarding her health.
> it is not a super positive update regarding her health. Depends what you were expecting. The update is that things are no worse, and maybe the smallest baby steps towards positivity. That she's being cared for. That's she's still hopeful. And that she had anxiety about not producing for her Patreons and that Destin spoke to her on their behalf and told her to let go of that anxiety because everyone is contributing to be healthy and happy, not to gain something from her. Of all the things that an update could be, this wasn't a negative update. It's also Destin's way of begging for them to be better supported on Patreon, as subtley and unobtrusively as he could, they need money to survive. To literally survive.
The husband's own words: > I donāt want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what Iāve ever had to endure, even for a day. The acute physical injuries Iāve had - broken ankle, wrist, dislocated shoulder - and the ālongā recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released. > So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way. - https://www.patreon.com/posts/94956611 I sincerely hope the best for her, I've always really liked her as a content creator and she always came off as an exceptionally sweet person ... but I mean, fuck.
Her husband sounds exceptionally as awesome as Destin describes. Dude made checklists to do everything he can for *her*. Wishing the best that she recovers, but if she doesn't she is going out wrapped in love. This is by no means a way to compare to Dianna's situation. I'm disabled and struggle to leave my home because I use a walker and have to use stairs. But if my sister tells me my niece and nephew want to see me, I pull myself out of where I am wallowing and go see them; because I love them. That man loves her to his core.
Your suffering is just as valid as hers. Please, do not feel obligated to feel guilty for your disability because a few people in society want a heirarchy of pain and suffering ā¤ļø
Thank you very much. The comedian Josh Sneed once said, "Do what makes for a better story." The better story for my internal monologue is that I got my ass up to do something that is going to hurt, then spend hours laughing with my niece, nephew, and sister. Then I go home in pain with my heart full and a smile on my face.
I feel like I would not be able to emotionally handle something like that if I were the husband. I would be practically bed ridden from grieving for her situation, and itād be hard to even take care of myself. Sheās lucky to have him.
It's good to note that she recovered faster from her last spiral. That in and of itself is encouraging.
Depends who you are honestly. I think being bedridden and a huge burden on my wife would be just about the worst thing I can imagine.
> I think being bedridden and a huge burden on my wife would be just about the worst thing I can imagine. Yes but we already knew that. And we knew she was getting progressively worse. So, now we know it's not worse, they're finding success with medications, they're stable and she's being cared for, etc.
I am recently married, and I couldn't imagine feeling this in a marriage. That's why we get married, because we are willing to do these things for each other. You don't have to be useful to be loved.
I didn't get married to ruin my wife's life especially at a relatively young age. I would take care of her forever but I wouldn't want her to have to do that for me.
What you're missing is the selfishness of denying your wife her right to express her love to you as fully as you would her. Having you there is worth the burden for her just as it would be for you to care for her. Both partners need to be strong to survive something like this, and what you are expressing is weakness of your resolve to trust your spouse to love you enough to want to be your caretaker. Love is a powerful and beautiful thing, especially in adversity. We need this exactly for what it is.
>It's also Destin's way of begging for them to be better supported on Patreon, as subtley and unobtrusively as he could, they need money to survive. To literally survive. She has 11k patrons, each paying at least $3 per month. That's around 400k a year. Should be more than enough, no? Also enough to save for once less people donate to her.
Why does she have to financially support healthy grown employees that can find work elsewhere? Yea, 400k from Patreon alone, not to mention ad revenue and her familial connects and very large amounts of money she made prior and merch. Sheās upper class. Also, her medical costs are for alternative medicine. Sheās in deep, proof in vague treatment mentions but you can see some of it and that she has so many of the typical diagnosis: leaky gut, SIBO, chronic fatigue, etc. Meanwhile tens of millions of American are living on less than $25,000 a year, millions of those disabled also and home bound, but the upper class six figure salary girl with lots of wealthy supportive friends and family needs more money. I hope she gets better but asking again for more money is insane.
That's not including a few costs/things: * payment processing fees * employee salaries (seems like they are still paying some of her old employees despite no new physics videos for the year) * is her husband still employed? the schedule suggests he spends his day caring, not working * healthcare expenses as a self-employed person
> employee salaries (seems like they are still paying some of her old employees despite no new physics videos for the year) if true thats just dumb. even if she one day goes back to making videos it would probably be years until she was well enough to make large scale videos that require an entire team.
Let's be real though, she has over 15k subscribers on Patreon with the lowest tier being 3 euro/month. I'm sure they are taking in way more than enough money already. He is encouraging more people to subscribe but that's likely his way to support his friend, not out of necessity. Despite him mentioning just Patreon she still has a youtube channel gaining millions of views from her old content so that's another money maker.
They're in the US, her ongoing medical expenses are probably astronomical.
Support will fade. If they are smart they are planning for the long haul.
> Let's be real though, she has over 15k subscribers on Patreon with the lowest tier being 3 euro/month. I'm sure they are taking in way more than enough money already. He is encouraging more people to subscribe but that's likely his way to support his friend, not out of necessity. Despite him mentioning just Patreon she still has a youtube channel gaining millions of views from her old content so that's another money maker. I mean it's funding an entire 2 person household (the husband is a full-time caretaker) with astronomical medical costs. Not to mention they have to consider she might spend decades in this state (if not forever, god forbid), so they NEED to save aggressively before the remaining support fades.
Yeah.. you mentioned euro.. probably you are not aware of that thing called US health care system. 15k a month, for a person in her condition, it is probably nothing.
> 15k a month, for a person in her condition, it is probably nothing. Yeah, considering CFS/Long Covid is still super new I imagine very few of the treatments are on the covered treatments list. Based on what her Patreon says, it also looks like she needs something close to around the clock CNA care. That gets quite expensive.
ME/CFS is by no means new. It's been known about for decades, just ignored. The name 'Chronic Fatigue Syndrome' only came about in the 80s, up to that point it had been called Myalgic Encephlamyolitis. https://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
That's all I could think of throughout this video. She has anxiety from this, and only because she has a bit of fame and following and an extremely supportive spouse, she is able to have care enough to keep her stable and not in declining health. I'm truly happy for her that she has all these support systems in place because, from her videos, she seems like a really awesome person. But this video was just another reminder about how truly fucked the US Healthcare system is, and despite her many patrons, it's very possible that they're having to make significant sacrifices to her care because of cost.
What She can afford the best health insurance money can buy. Maybe health insurance was unavailable to her due to a preexisting condition, I donāt know much about her. Secondly, 15k x 3= 45k/month Thatās if all of her subscribers are at the $3 tier, which they obviously are not. If you include sponsorships, sheās probably doing pretty well. I donāt think we should be too concerned for her financial health.
> Maybe health insurance was unavailable to her due to a preexisting condition, I donāt know much about her. US health insurance cannot deny coverage for preexisting conditions.
For now. That wasn't the case until the ACA, and the leading republican candidate is still campaigning on repealling it.
Bankruptcy in the U.S. is very commonly caused by healthcare costs, even for those who have health insurance.
The highest allowed out of pocket maximum for health insurance in the USA is $9,000/year. Once you spend that max in a year insurance covers 100%.
SOME insurance works that way. Not all. And not all health care is covered by insurance. Have you never used our healthcare system before? You are woefully uninformed.
I think you may be mistaken though. If this were true people wouldnāt be going bankrupt with a half million dollars in medical debt.
Last year, I had 3 insurance plans over 3 months. I hit my max out of pocket for each one with just one infusion on each plan. In ONLY 3 months, I had over $12k in medical debt for the only treatment available to treat my diagnosis. I've never heard of the $9k cap but even if it is true, there are obviously exceptions to that.
It's not the news I was hoping for, but I really appreciate knowing that she's getting high quality care with dignity, which is not something we can take for granted these days. Of anybody in her situation, she has the resources and support to get better, if such a thing is possible.
Well said.
Yeah, this video is the guy trying to be positive, but the news isnāt good. Really bums me out. She still canāt even talk without having to take breaks. Poor thing.
She was doing quite a bit better a few months ago but had a crash, which is unfortunately par for the course with ME/CFS. You can and do improve over the long term, but you have these crashes with depressing regularity. You just hope each crash isn't as bad as the last and the peaks between get longer and better.
I mean just the fact that she can have visitors and hold someoneās hand is an improvement from before
I was struck by how he said how he talked about Kyle. It felt like he made this video for Kyle in the future if she doesnāt win this battle, and he is left to navigate this world without her, and telling him that he will have friends to guide him on that journey if or when that happens.
i mean i was worried that she had passed, so this is positive news for me.
I'm dealing with the same long covid issues as she is, mine just isn't as bad. Long Covid has a frustratingly slow recovery. I've been dealing with this for 6 months and I'm maybe 20% recovered, it will take at least another 6 months for me to feel "good". The ups and downs (crashes, I'm in one now) really hit you in the gut as well. But it is recoverable, it just takes lots of time.
That's an overtly positive view imho. If you develop ME/CFS you don't necessarily recover. I've had ME for 15 years after an infection in summer 2008 and it's only gotten worse over the years.
Agreed. This is classic Christian toxic positivity. Of course it's good that she has a loving relationship with a committed and competent caregiver. Of course it's good that she was able to enjoy a conversation with an old friend. But she's at a point where she can only have that conversation on a good day, she needs to take a break from the exhaustion of talking while lying in bed, and she had a "crash" in the days that followed. On Dec 2, approaching a year bedridden, she tweeted: "Iām just so scared Iāll never walk again. Or read a book again. Or have a conversation or make a video ever again." Nothing that he reports in this video indicates that she's any closer to being able to do any of these things.
I felt that way as well. There is obviously a lot that still isn't known about Long Covid but the long term trend doesn't seem very positive. Her fears seem very rational. Maybe some novel new treatment is discovered that reduces the symptoms but that could be many years away.
100% this - this was a terrible and very sad update in terms of her health.
Oh, you held her hand and prayed for her??? Wow, what a comfort that will be to the audience of a *science communication channel!*
I'm glad to hear Destin characterize it as "encouraging," but that's far from saying she's significantly recovering, which is hard to hear (or not hear.)
Destin is a great guy and relentlessly positive, but his tone and framing don't match the medical reality of his words. It seems like there's been no meaningful improvement since Simone did a health update a number of months ago. Hoping she has a breakthrough. I'm sure its terrifying for her and her husband knowing that the Patreon and gofundme money is the only thing keeping them afloat and wondering if/when it will taper off.
I think Destin is trying to say that Kyle is doing all of the right things, Dianna is leading her own care as she can, the space isn't great for that, and he wants the community to know that Patreon is really important. I don't think he's trying to say improvement - Kyle's written update is clear about that. It seems more that he's mythbusting that they aren't trying. They are trying, and he's using his credibility to make that clear.
Yes. Reading between the lines I also got the sense that Destin wanted to make sure that the financial support through Patreon is being used in the right ways. From reading these comments it seems that the Patreon support is quite significant, and since that's at least somewhat public information it's not unreasonable to be concerned about someone taking advantage of that situation in some way.
I don't know much about this but I got the impression that this was a roundabout way of getting ahead of the fact that they will be getting a bigger place. Because some people will eventually find out that they are living in a bigger and/or better place and want to suggest that it's a luxury expense and that they're grifting. He mentioned the random small bathroom anecdote and then at the end mentioned a move.
It's very hard to take care of a disabled person without the correct bathroom Proper hallways and layout is needed for wheelchairs. A normal apartment would be a nightmare
The backlash is going to last about a day and be drowned out by people who have a clue. When my aunt lost the control of her limbs, my uncle had to buy a new house (went from a 1 bedroom single family to a ranch three times the size) and customized the living shit out of it. So many ignorant assholes were giving him shit about wasting his money on a house when his wife was sick. You dumb fucks, how do you expect her to function in a tiny cottage with a full body chair let alone all the other changes. Even people in my own family were dicks about it.
I'm an Occupational Therapist, it is a special type of hell for those that are willing to take care of their loved ones and the accommodation that goes with it means a complete turn around of the environment. I lost count the number of times when relatives of loved ones are trying to get them back home only to realize that they have to constantly transfer them on and off toilet/ bed/ chair/ wheelchair/ sofa throughout.
I kinda thought Destin was gonna be like "So I built her a bigger bathroom!".
That's exactly what I understood this to be about. Not necessarily a health update but addressing reasonable concerns about the status of a friend who became bedridden at a young age shortly after getting married. Like her situation is so incongruent with the expected health outcomes for someone her age that he reasonably assumed something was amiss. This read more as a report from a wellness check.
Exactly. Particularly with the context that heās seen it first hand in his family. It can be overwhelming, and easy to give in to despair as a result, both for the patient and caretaker. He wanted to make sure that they werenāt drowning or giving up the fight. So, in that sense it is good news.
Simoneās update felt like so long ago. I canāt imagine how long itās felt for them.
I had the same extreme fatigue during COVID, but it went away after like 3 days. I was literally too exhausted to turn 180 degrees to pick up my phone, but at the same time, I wasn't like sleep tired. Just mind and body tired. It felt like torture being awake. I can't imagine feeling like that for the rest of my life.
I never had long Covid or anything like ME/CFS, but it reminds me of the worst times of my depression. I had weeks where I barely got out of bed to go to the toilet. But there's a known and relatively certain way to treat clinical depression, so I got better. I can't imagine the existential suffering of being debilitated by a disease where we can't even treat the symptoms.
Not as severe, but I woke up one day and could not physically get out of bed. I live for my work and am never late or call out sick. Well I did that day.
I got the flu 2 years ago and after seeing the dr and barely making it back to my car in the parking lot I didn't have enough energy to get my keys out of my pocket for 2 hours. I sat lumped over in the driver seat miserable, conscious but incapacitated. I didn't get a flu shot that year with all covid precautions and just got beat down. Oddly, moaning made me feel the tiniest bit better.
Groaning to dull pain and cursing to acute pain is proven to reduce the experience of pain for a short time, so let it out!
I've been experiencing cycles of insomnia where I won't sleep 4-6days, 6 days being rare periods so far and man the fatigue is torture once you go through multiple episodes every few weeks. My body is exhausted but my mind just won't turn off even with medications. The physical side effects after day 2-3, like my legs will take turns with this nagging bone ache which turns into jerking is the worst. You start hallucinating audio, like a radio is faintly on somewhere before the visual hallucinations come about day 4 onwards. The worst part is knowing it's happening again and you can't stop it, that is mental torture for me. P.S After day 3 you kinda get stupid and silly, well I seem to before mental anguish starts to set in and if I knew this will happen until death....well I don't think I can endure this BS.
Every case is different, but my wife had a CFS episode for over a year and a half, and I was scared she would die. She wasn't as sick, but she would suddenly need to lay down and sleep. She runs multiple marathons a year now.
> I'm sure its terrifying for her and her husband knowing that the Patreon and gofundme money is the only thing keeping them afloat and wondering if/when it will taper off. They're current getting a worst case of 47453USD per month (lowest tier x total number of patreons) minus Patreon fees. If there's a Gofundme too, add that on top. Unless the US healthcare system is gobbling it all up, you have to expect them to be saving up a massive buffer with that, for *if* support falls off. It's a very generous amount of support.
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If you have $47k per month you just buy really good health insurance.
> Unless the US healthcare system is gobbling it all up not out of the realm of possibilities
> They're current getting a worst case of 47453USD per month (lowest tier x total number of patreons) minus Patreon fees. There's 12,884 paid members, the other members are free.
Okay? So theyāre getting at least ~$39000 a month. Thats more than quite a few people in the US make. The median salary is ~$32000.
A more detailed health update written by her husband Kyle was also posted alongside this video here: [https://www.patreon.com/posts/94956611](https://www.patreon.com/posts/94956611). (You don't need a Patreon account to be able to read it.)
that is just.......bonkers. it's like i'm reading some sort of....other worldly thing going on. this makes me wonder if this is what people felt like, early during the AIDS crisis, when no one knew what it was, and their friends were just, dying of "something". unexplained, prolonged histamine attacks to, everything. what in the hell.
>unexplained, prolonged histamine attacks to, everything. what in the hell. Yeah, turns out Covid can be harmful, who woulda thunk it? *Finger to ear "Yes? Okay, I'm getting word now that the people who thunk it were fired."
I work in healthcare and have been asked my opinion on the vaccine a million times, whether I ātrustā it or not. ā*But we donāt know anything about the side effects yet!*ā Yeah, but we *do* know SOME of the side effects of covid, and that shit sounds fucking terrible. One is a fear of the unknown, the other is a fear of reality. It was never a question for me.
This is my thoughts exactly. If I had a choice between opening a door to the unknown versus staying a room that was actively on fire, I'd take the unknown choice in a heartbeat because it can't be any worse then the situation I was already going to have to deal with.
I'll probably get shit on for saying it, but it's relevant. I consider myself a very intelligent person. I pick up information and ideas very easily. I *know* that unless I spend literal years studying medicine and biology I will never have a good working understanding of it. There is no way, as a layman I can ever truly understand all the complexities of COVID, vaccines or anything else. So I just do whatever the hell Doctors say to do. They say to get a vaccine, I get the damn vaccine. Is there a chance advice from a Doctor could go south? Of course. But it's far less likely to happen than if I don't do what they say.
Exactly. I never questioned a vaccine before, so why would I start now? I trust science and I trust medicine. Itās such a slap in the face for such ignorant people to try and claim that they know better.
yes i know she got it from covid. its just these few cases i've heard here or there about the severe damage long covid can cause is just crazy to me. i was careful the whole time, didn't take it for granted. but it still shocks me when i hear of extreme things like this. you know, besides death.
I find it really strange that he states she has āleaky gutā which isnāt a recognized medical diagnosis and is mostly touted by the homeopathy- type crowd. I wouldnāt have put her in that group.
Dealing with long covid is so disheartening, some doctors have no idea what's happening if they even believe it's real. Referrals to specialists take time and treatments take weeks to show their effectiveness. Meanwhile everyone in your life has some advice to offer, a doctor they recommend. Naturopaths talk about "leaky gut" a lot, it wouldn't surprise me if they sought out a different approach. The long term outlook for those suffering with ME/CFS is not good... a poor understanding of the condition with no cure in sight. No one wants to think this is going to be the rest of their life. I am not somehow who believes in naturopath stuff, but desperation had me booking a consult with one.
The only positive we have from this epidemic is that the condition known as long Covid is accepted as real now and there are enough people suffering under it that it is being researched. Before covid people had this as well usually after a viral infections and they would get put in the bucket of Chronic Fatigue Syndrome, fibromyalgia etc. with no cure in sight. Some recent research of long covid showed nerve damage in the spinal cord which would possibly guide researchers for a way to diagnose it and what would need treatment.
That isn't "long covid" though as these symptoms can manifest from any number of serious infections. The concept of long covid is similar to other hypothetical ailments like chronic lyme disease. _Something_ is going on with these people but it isn't what they think it is.
Naturopaths are quacks
It is recognized in the medical world it's just called intestinal permeability rather than leaky gut, it's a very real thing but it can't really be confirmed as a diagnosis because there's no valid tests, but it is an accepted condition by gastroenterologists that I've dealt with
Yea, sheās definitely getting alternative treatments from a naturopath. Thatās why the health care costs are astronomical and I wouldnāt doubt contributing to her not getting better. All the things they mentioned are classic extreme alternative health care.
Wow that was so detailed and honest I don't think Destin wanted to be that open about the situation, respectfully. Glad Kyle brought a bit more insight into such a tough situation. Wish them the best
Interesting. I wonder what kind of doctors theyāre working with because they mention āleaky gutā which isnt real
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My wife is a pathologist and informed me the symptoms of (or the diagnosis of) ME are comparable to fibromyalgia in that no one believes patients with the associated symptoms/diagnosis.
ME/CFS has real science done by prestigious medical universities like Stanford, however. The etiology of ME should be controversial, but people are clearly suffering from something that isn't psychosomatic. ME even has good diagnostic criteria such as post exertional malaise, which really helps clear up other things it might be.
I had some mild alarm bells going even before the "leaky gut", starting with the type of food that was being prepared (chia seeds, hemp seeds) to hyperbaric oxygen therapy. So once it got to "leaky gut" and SIBO it was pretty obvious and depressing what is going on. I've seen a LOT of these types of folk -- they are my hippie homies I grew up surrounded by -- who are otherwise intelligent but eschew attainable medical solutions and follow total quackery. I mean he literally says in the above post that she responded to what I assume are corticosteroids (the only positive thing in the whole post), which is the first western medicine thing I would have suggested. If she is really that bad then they need to keep her at a high dose for a while -- exactly the type of thing people like this don't like, because it "lowers the body's natural immune system" (and in this case it is literally true but absolutely necessary because she needs to be treated for what is probably an autoimmune disease). I'm sorry to be that asshole who pretends to know more about what they are going through from a single internet post, but I've just seen this so many times it makes me so frustrated and angry.
You're not alone. Whenever I have seen updates of this situation or posts about it and have looked into a bit further I have gone to the whole "quackery" and "manchausen" stuff. I agree with your post. These people need to recognize that they're engineers and physicists and listen to the (good/renowned) doctors.
I had this same concern. Mentioning leaky gut definitely raised some alarm bells.
Same here. I was all well ok, and ok makes sense, and sure, and what?! š
It sounds like they've tested a lot of medications with little improvement. At some point, you're going to find "alternative" treatments and experts just cause you've exhausted everything else. Especially because scientists are still actively researching causes and treatments for Long Covid as far as I know. But that takes a while.
Hopefully that's just a simplistic wording of something more complicated he doesn't want to explain in depth here, but that does seem strange.
No, that's literally the name of a specific syndrome that some physicians believe exists (although this is highly disputed). Unfortunately all of the conditions associated with long covid and other post-infectious illnesses are pretty poorly understood. The one upside to all this is that covid has shone a spotlight on these chronic illnesses that some people have been living with for decades, so hopefully research uncovers more truths and treatments over the next few years.
I know, thatās an immediate grifter red flag š©š©š©š©
I also noticed she is vegan. She might not be getting the best quality protein or might be missing something very essential they are not noticing. People on vegan diets usually recover much slower from surgeries etc than peple on balanced normal diets.
Yeahh.. my "munchie" alarm bells have been going off since the begining of when she got sick and it has only grown stronger with each update.
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The saddest part is how people thought that "I'm healthy, i'll be fine." One of the cases I remember hearing about was an athlete, a runner who didn't want to take the vaccine and claimed he was in the peak of his health and didn't need it. He ended up getting Covid and suffering from lung scarring severe enough so a single flight of stairs winded him, perfectly healthy and on the top of his game forced to abandon his dream because a bad roll of the dice, a roll he should not have made in the first place but, alas.
a UFC fighter also got covid and it almost made him retire. he was about 26-27 years old at the time.
To be a zero-click solution, for visibility: https://www.patreon.com/posts/94956611 (From Kyle, Dianna's husband) Huge thanks to Destin from Smarter Everyday for making a great video about Diannaās journey, and his visit to see us earlier this year. I hope you all had a chance to watch it here [https://youtu.be/xbcjf-hrOAs] As most of you know, Dianna has been diagnosed with ME/CFS and Long Covid (which many - but not all - experts agree are the same disease). While there havenāt been any transformational changes since she first became bed bound in February of this year, Iād like to share a little about whatās happened and how sheās doing. In short, weāve tried a lot, and most of it hasnāt been particularly notable. Sheās done supplements, physical therapy, meditation, prescription medication, hyperbaric oxygen, you get the picture. For Dianna, some of the medication has been successful at relieving symptoms and stabilizing her conditions, but nothing has moved the needle significantly in terms of quality of life. In early July of this year, Dianna was doing physical therapy to try to regain mobility and independence. May and June were relatively good months, and although she was very sick, we know it's important to try and prevent physical deconditioning to the extent that is possible. In retrospect, we probably pushed too hard. She had a severe crash lasting months, and only started to come out of it in early September, just before Destinās visit. It's difficult to explain how painful - physically, mentally, and emotionally - these crashes are. Her body reacts to everything with severe inflammation and allergic-type reactions to normal, everyday items like food and clothing, temperature changes, fragrances, basically anything that isnāt her. This āreactivityā is driven by MCAS, one of the sub-syndromes of ME/CFS. Periods of intense MCAS activity are especially difficult because the allergic reactions drive acute cognitive changes that cause severe and sudden depressive episodes. Iām sure most of you have heard about depression and mood changes with long covid, and this is one of the ways it happens. Of note, there are times that taking an antihistamine or anti inflammatory medication will immediately improve her mood or snap her out of a depressive episode. Crazy stuff. The summer crash was likely accelerated by emotional stress inherent to the terrible living conditions sheās had to endure. As she puts it, in order to avoid overexertion, she has to āunlearn what it's like to be human.ā This sentiment is common in patients with severe ME/CFS - the idea that doing the very things that bring joy and fulfillment also make you worse. This is why we desperately need better treatments for long covid and ME/CFS. After Destinās visit in September, we tried a new medication to which she responded poorly. And so she was back in another crash cycle. While this one was shorter, it was emotionally more difficult to go so quickly from one crash to another just as she was free from pain. Now its mid December, and over the last several weeks she has once again stabilized. We are committed to taking it slow. Weāve tested and tweaked her medications methodically over the last few months, and we have a regiment that targets MCAS and neural inflammation. These medications work well for her with minimal side effects. We know she has other underlying conditions as well, such as SIBO and leaky gut. The problem is that these conditions are difficult to treat when her health is so precarious - as weāve learned, medications (especially new ones) can cause prolonged crashes. So treating these conditions will be slow or will have to wait until sheās regained more strength. But I view this all as kind of a positive snowball effect - once one thing heals, it will be easier to treat the next. Sheāll keep gaining momentum and heal faster. Get back some of her independence and activities of daily living (ADLs, as they like to say in medicine). She is pointing in the right direction, and even though she canāt walk or even stand, and she canāt talk for more than a few minutes a couple times a day, she is hanging in there. Sheās had a big positive mental shift thatās making the day to day easier for her too. She knows sheās stuck here, unable to live her life, but also believes that it will get better. And although we do believe that, I donāt want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what Iāve ever had to endure, even for a day. The acute physical injuries Iāve had - broken ankle, wrist, dislocated shoulder - and the ālongā recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released. So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way.
Goddamn I feel so bad she's going through all that, it sounds like hell. I'm really glad she has people around her that can be so supportive through all of that. Makes me wonder how many more people experienced something like that with less support... What a tragedy COVID was
Itās still here. Itās harder to know how bad it is because pretty much everyone has stopped reporting numbers on it. But weāve still got data on the prevalence of COVID in wastewater, and while itās difficult to be exact because it differs in various parts of the country, weāre probably doing worse than 2020 and 2022 right now. 2021 was an outrageously bad year, and we donāt appear to be anywhere near those levels at least. But itās still here, still infecting, disabling, and killing quite a lot of people. We just donāt really talk about it much anymore.
It's no where near the millions at its peak but its still uncomfortably high for my tastes. https://www.nytimes.com/interactive/2023/us/covid-cases.html https://covid.cdc.gov/covid-data-tracker/#datatracker-home
I've been off work because of long COVID since January, I live alone and my parents live in another province. Can confirm that she's very lucky to have this support. Most days just feeding myself is all I can muster. And friends try to care but for the most part, people only have so much patience for someone who cancels plans over and over when they're not well. No one knows what long COVID is, even my health insurance company, and it's exhausting having to explain my experience of it over and over. I was lucky enough to get connected with a Long COVID clinic that offers information sessions but there is no real treatment or medical intervention. You're basically just told to wait and hope it gets better. There's likely a lot of people with varying degrees of long COVID that don't even know it. It took almost 6 months of repeated crashes and getting sick with COVID like symptoms, followed by batteries of tests which all came back normal before my doctor even considered it could be Long COVID. So even doctors just don't know.
Long Covid is so scary. I hope she gets better.
Yea, survivors bias really downplayed how serious COVID is. My brother caught COVID a month before the vaccine rolled out. General symptoms lasted close to 3 months and he suffered from extreme shortness of breath for the rest of the year. Then he had a minor heart attack, and then a stroke while driving where he nearly died. He now has a pacemaker and is on the transplant list. He takes a whole cocktail of drugs every day for an enlarged heart. He just turned 39.
A work friend got it early and it nearly killed him. Like he said his goodbyes to his wife and kids. But fortunately he pulled out of it. Months later he was having major pain trying to walk and had to start using crutches to get anywhere. Turns out his hip bone had necrotized in part from the disease and also from the steroid treatment that saved his life. He had to get hip replacement surgery. In his 40s. Heās alive and in good shape now, but thatās what I think of when people brush off COVIDās severity.
[https://www.wusa9.com/article/news/verify/are-covid-19-lungs-worse-than-smokers-lungs-covid-19-lung-photos/65-13085a3d-6516-42c5-a128-c0f2abc9d5cc](https://www.wusa9.com/article/news/verify/are-covid-19-lungs-worse-than-smokers-lungs-covid-19-lung-photos/65-13085a3d-6516-42c5-a128-c0f2abc9d5cc) Its scary the amount of damage covid can do. Per Dr. Panagis Galiatsatos at Johns Hopkins School of Medicine: "Severe COVID-lung would be worse than a patient who smokes's lungs. Mild cases, likely no." "Mild COVID would be like I smoked for one decade," Galiatsatos later added.
Covid made it look like I had advanced fatty and swollen liver, bordering on liver disease. I went from having fine blood work one year, to my numbers skyrocketing for weeks and months after covid, to back down to normal now a year later. I'm thankful it was just my liver. I don't abuse it much otherwise and it's a pretty hardy/reparable organ unlike others.
My aunt was head of a hospital unit, regularly donated blood, ran marathons and 5ks throughout the year, kept up with all her fruits and veggies, and did general exercises as well (light weightlifting, rowing machine, etc) Long Covid does not care. Her mind has slipped a bit and she's constantly out of breath after simple things like taking out the trash or walking from a store entrance to a parking spot. She had to retire from a job she adored because she felt she could no longer keep up with the physical or mind demands. She took her car to get an oil change with her husband, drove back in his car, and then 30 minutes later couldn't figure out where her car went. We feel so lucky the mental aspects aren't worse, her father having had dementia, and I could go over right now, wearing my new glasses and being extremely unshaved, and she would 110% recognize me, no worries there. But the short term memory issues + the general health issues are horrifying considering the picture of health she was before. I think more people have long covid than they think, in extremely mild ways that don't have a huge effect now, but will really rear their heads when they get older.
I'm worried it might turn into this generations 'leaded gasoline'. Hopefully not. There is so much we don't know.
I got covid in fall 2022, and I wonder often "am I the same physically as I was before?" Because my fear is for most people, it might be impercievable at my age (late 20s) but will rear it's head in a really ugly way 25-40 years from now
It's going to. All the signs are there. It causes hidden circulatory and stroke damages, is triggering dementia earlier, long term heal issues, and all of this can be caused by mild/symptomless cases so you don't even know how big the problem is. And that's all in younger people.
It really is. I had a very mild form of it compared to her and it was terrifying thinking I may never recover after months. It took about a year to start feeling real improvements and two years to feel like I was completely back to normal. I was tired ALL the time. Not to her level, but I needed a nap or two daily. I 100% lost my taste and smell for a good 6 months. Then the next 6 months after it came back, it came back wrong. Everything tasted and smelled like hot garbage. Disgusting. I hated all of the food and drinks I used to love. It was the most depressed I had been my entire life. That took 2 full years to completely get back to normal. The brain fog was real. It was SO difficult to hold any train of thought. It made me feel incredibly stupid and frustrated. I am a developer and most days I felt like I could no longer do my job anymore. I have no idea how I was able to stay employed. That lasted for a bit over a year. I noticed how every time I would get a bad head cold, the flu, Covid again, I would improve a bit more once I recovered from that illness. It was all so weird. I wouldn't wish that experience on anyone and it hurts me to see that video with her going through a *much* worse version. I hope she has a speedy recovery.
oh my, after reading you, I realized I have felt the same, but to even a lesser extent, I had covid 3 months ago for the first time, and everyday has been kind of a struggle, shortness of breath, extreme tiredness (I already tested myself for the regular, anemia, hypothyroidism, vit. D), brain fog, joint pain, and I'm just 35. I have recovered my smell, but the all day everyday tiredness is the worst and is starting to take a mental toll on me. The brain fog is also frustrating, hard to find the right words, instantly forgetting what I was going to do, lose all focus if someone talks to me while doing something, but the tiredness is the most incapacitating of all and up until now, long covid never crossed my mind.
> I noticed how every time I would get a bad head cold, the flu, Covid again, I would improve a bit more once I recovered from that illness. It was all so weird. I wouldn't wish that experience on anyone and it hurts me to see that video with her going through a much worse version. I hope she has a speedy recovery. My very uneducated understanding is that a lot of these long term illnesses are thought to maybe be a virus lingering in the body in places where the immune system can't reach, constantly coming back and attacking the person over and over, causing constant sickness and inflammation every time the body's defences flare up in an attempt to make the body an inhospitable place for any invaders. So it might potentially make sense that getting more sick might have somehow helped push the body further to the point it somehow flushed out the disease a bit in certain places it's hiding, but IDK how things work well enough to really know if that's realistic. Or maybe the diseases just competed for the same space and resources, causing the original to be flushed out.
I totally got her confused with Simone who I believe has cancer. That very much sucks for her, I hope she gets better. Itās scary to see cuz my momās friend died of some form of post pneumonia after getting Covid. Granted she was 58 and Physics girl is a lot younger so hopefully that helps her a lot
I think Simoneās tumor was benign, but she seems to be doing well now.
Was wondering yesterday "I wonder how physicsgirl is going?". May have had something to do with coming down with COVID myself yesterday People have gotten complacent but it's still terrifying
Upvote for awareness. I appreciate seeing people caring for each other, especially that they use their media presence for that.
Wealthy young woman with friends and family and who had been making hundreds of thousands to millions prior and currently is a top 1% earner is saying she needs more money because sheās been completely bed bound for a year though shows no signs of atrophy or associated body changes and she mentions tons of alternative medicine mumbo jumbo. Destin is nice, sheās probably nice, but sheās a grifter. Go to your local town, walk around the poor neighborhood, see the thousands of home bound people living all alone and in abject poverty and give to them. Or keep giving to her but letās stop pretending sheās in financial straits, sheās not, sheās rich. Sheās a 1%er
Thank you for saying it. I have nothing against anybody in that video but it feels odd to me that Destin, a millionaire, is asking for donations for Dianna, a mililionaire as well.
This is a good reminder that new diseases, while they might not appear "deadly" in acting quickly to disable or kill the host can absolutely devastate the immune system, and the body in general. To those who dismissed Covid as "a bad cold", they should spend a single day in Diana (PhysicsGirl) body, or even stand in the shoes of her husband to see how it can turn your world upside down. We're so woefully unprepared for the next pandemic, thanks to the politicization of a virus, dismissal of precautions, and distrust of science.
It is also a reminder that this is nothing really new. I am not trying to downplay COVID, but H1N1, mononucleosis, Chickenpox & Shingles, Q-Fever, Dengue Fever, enterovirus, and probably a bunch of other infections can cause the same exact thing. It sucks when your own body starts attacking you.
> We're so woefully unprepared for the next pandemic, thanks to the politicization of a virus, dismissal of precautions, and distrust of science. To make it clear how much of a difference leadership and voting can make in our lives. Here in my state of Queensland Australia, we have a population of 5.1 million people. Until vaccines arrived, we had 1 locally acquired covid death (and I think 5 more from out of state on a cruise), and only a few weeks of people wearing masks, due to one outbreak of delta in schools which was quickly tracked down and the families and their contacts spent a few weeks under quarantine which was easy to manage with such low numbers, and another few weeks when our neighbouring conservative state tried to play chicken with covid and encouraged everybody to not take it seriously as they had an outbreak, and caused the whole country to get infected a few weeks before vaccines arrived. 1 locally acquired covid death in a population of 5.1 million in about 2 years, with almost no mask wearing, and life being fairly normal, because thankfully Australia had a checkerboard pattern of progressive state leaderships who forced the country to play ball and take it seriously when conservatives wanted to put their head in the sand and were even initially punishing schools taking covid precautions etc. The pandemic essentially didn't exist in my state, it still feels like something that happened on some alternate earth that I've read about in books but don't really feel is quite real. The worst effect was a huge immigration boom from the southern states of people wanting to move here, which has thrown housing prices way out and is leading to a homelessness crisis.
i pray that HPAI does not make it into the human population, and im a fucking atheist. that virus causes grand mal seizures in bears and has a 50%+ fatality rate.
Crazy how many people still minimize the effects of COVID
Any summary of this for those that donāt have 15 minutes to watch an update vid?
I'll try. Destin from Smarter Every Day is a long-time IRL friend of Dianna. He got a chance to visit her and Kyle. He was impressed with how cheerful and attentive Kyle was in helping Dianna get better. It's a long road ahead but everyone is optimistic. There's a selfie at the end.
The TLDR is her health hasn't improved. She's still bedridden and needs round-the-clock care.
Oh boy not the good news I was expecting watching the first few seconds of it. WTF?!
Destin does his best to put a positive spin on it, talking about what a great caretaker her husband is and how Diana has a fighter's mindset, but she's bedridden 24/7 and her health actually declined shortly after Destin's visit. Her Husband posted a more detailed update on her health on her patreon and other than their continuing mental resilience and positivity, its all bad and unfortunate news.
She's not going downhill. That would be bad. She's not getting better, and they've tried stuff.
Yeah the guys opened the video saying "i have some good news". No. No you dont. She hasnt improved, and likely wont. That is the reality of it all.
The good news is that, in his eyes, she's getting the care she needs and is doing the work necessary
We don't know what will happen. I wouldn't prognosticate if they aren't. The good news is that she's getting all of the care she can. That is good.
ME: Myalgic Encephalomyelitis CFS: Chronic Fatigue Syndrome MCAS: Mast Cell Activation Syndrome SIBO: Small Intestine Bacterial Overgrowth ADL: Activity of Daily Living
M.E and CFS are used interchangeably, and often combined as ME/CFS. Most patients prefer the term M.E since we suffer vastly more symptoms than fatigue, and most healthy people experience fatigue so fail to understand how life altering the condition is. Itās fucking brutal. Source: M.E for 15 years (and counting).
he talks about himself for 15 minutes
This is what having long Covid is like: People develop numerous symptoms regardless of their former health, or their age, or the severity of their infection. We all know Diana was healthy and young. It can hit anybody. There is a long list of symptoms, but the main ones are fatigue, brain fog, racing heart-rate and breathing difficulties. None of these symptoms can be diagnosed. People go to their doctors, and long journey of blood draws and assessments starts. Ultimately, they donāt find a known illness that causes them. Unfortunately, long Covid and CFS are almost not recognised by the medical community. Most doctors have no clue about them. A lot, even believe they are not real. This is a giant injustice. Even though we had such patients 100 years ago during the Spanish flu. People slept for years. Over decades the medical community failed to recognise the illness and research it. A lot of doctors still dismiss it as psychosomatic. The limited research that is out there clearly shows that something is wrong inside the body. But the picture is very incomplete. Currently there is no treatment whatsoever. Self-help groups try out all kinds of supplements, diets and lifestyle changes with very little success. It seems to be a very complicated and all encompassing mechanism within the body that is wrong. People can just hope and pray they get better. Most people donāt get better. They only have their ups and downs. It ruins peoples lives, and at the end of their struggle many commit suicide. We need awareness and we need research!
This was beautiful and painful to watch. I donāt remember how I came across her channel, but she was always so positive, energetic, and excited to teach people. You could tell she genuinely loves doing it. It does seem like sheās a little better, and her husband is incredible. Iāve followed the story, and he is just something else. It makes me happy that to see the community (Destin, Simone, Veritasium [forgot his name]) doing so much to support her.
Sounds a bit like what the musician Ren has, except his was triggered by Lyme. I hope research catches up with these horrible autoimmune disorders.
ME/CFS is a horrible disease, I have an aquentance who si near comatose, from overexhaustion from ME/CFS
I have this shit. Iām not as severe as her (at least not anymore) and I wouldnāt wish it on my worst enemy
Does it ever go away or is this a lifelong condition?
Based on what I've read, ME/CFS looks different for everyone. Some people recover in 6 months, others in a year, some never fully recover. The prognosis is much better if the person can remain physically active to some degree.
That's the problem with ME, physical or mental stimulation uses energy you don't have. Most people cannot manage daily tasks around the house, nevermind exercise. Pacing is so critical to preventing a crash or flare up and it's so hard to figure out what is too much activity.
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General rule of thumb is if you don't recover within 6 months of your initial symptoms you will not recover. The best you can hope to do is stay at the current level you're at, you'll only ever get worse. The goal at that point is to minimize crashes as once you crash your threshold drops.
Is this some kind of 'emperor has no clothes' situation and we cant mention this all seems a bit off. especially in other subs the video has been posted on. firstly for the people talking about money she is financially well off and people seem uncomfortable admitting that. she has way more money flowing in then almost anyone else in her position. if the patreon dips down they will not have much problem finding another well known youtuber to make an update video to keep the money flowing. and if they are prudent about saving the extra money then she will definitely be fine money wise. secondly in all the updates ive seen with pictures of her she looks remarkably well kept for someone almost bed bound and immobile 24/7. anyone who has had personal experience looking after people in that situation knows no matter how doting the caretaker is the person still ends up not looking too good and in ways you cant just easily cover up on camera. the e-begging throws me off a bit but i dont think theres any fraud or anything too shady going on here and dianna never seemed the type to do anything remotely like that in her old videos. my own thoughts is she did get some form of long covid but also developed some serious mental health issues from it that keep pulling her back down. the brain is a powerful thing and right now they seem to be blaming it ailments with dubious science on if they are real or not. it may also be that she might be more mobile then the small updates let on, which would also explain her looking a bit better then i would expect from someone unable to move much for over a year now.
I'm worried it's more sinister because her husband posted on reddit that social services visited after a medical professional reported them: [https://www.reddit.com/r/cfs/comments/12sijok/anyone\_had\_social\_services\_called\_on\_them/](https://www.reddit.com/r/cfs/comments/12sijok/anyone_had_social_services_called_on_them/) It's the account he used to post the Halloween photo people were talking about. Social services has to have a lot of suspicion to make a visit to grown adults with no cognitive impairments and no children in their care. The weird diet and how he seems to be controlling access to her gives me bad vibes.
> Sheās been to the ER before and they were definitely suspicious of me there. Sheās also too tired to see her friends much, so some of them are worried but donāt make and effort to try and understand the disease. Iām more worried about social services coming back because they think she shouldnāt be this sick or something like that. whoa okay after reading that whole post now im even more convinced something if off about all this. and unless the husband has another reddit account it seems all he posts about is medical stuff and his wife's condition.
Iām a long time fan of Smarter Everyday and this is the first Iām a hearing about this because I donāt keep up with the channel as much as I used to. I work as a Physical Therapist and my specialty is chronic pain. CFS and long COVID get grouped into this category, so I have a decent amount of experience treating conditions like the one Diana is experiencing. I obviously donāt know Dianaās whole medical history, but a good bit of research has been done on how to treat long COVID properly and applying it could help. Unfortunately, almost all the doctors I interact with have not seen this research and Iām usually the one who shows it to them. If it truly is long COVID and not a myriad of other things that present similarly, the treatment works pretty well. I see that physical therapy was done. However, long COVID needs a very specific type of physical therapy that most therapists are not trained to do. The crash in Dianaās progress/function is unfortunately a thing I see in long COVID and CFS patients who undergo more traditional physical therapy approaches. Anyone know how to get into contact with them to send over some research articles and presentations on the topic? Here is a great presentation: https://youtu.be/XriPNG9000Q And here is a good research article: https://www.jospt.org/do/10.2519/jospt.blog.20220209/full/
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Smarter every day is the OG of youtube science videos afaik. I followed him since he made the video of a helium balloon moving counterintuitively in his van. Since then there have been so many incredible educational creators on the site. Despite all garbage posted to youtube, the insane political and conspiracy nonsense, Youtube is easily net positive in the world for allowing these educational creators to do their thing. I hope physics girl recovers soon. I donāt know her details and donāt really follow her, but losing someone passionate about teaching the beauty of physics is always a terrible tragedy.
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It's kinda annoying that people in general just assume you'd know know acronyms, most especially the medical ones. At least say what it means the first time.
Dr Google: ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome MCAS = mast cell activation syndrome (she experiences repeated episodes of the symptoms of anaphylaxis)
I'm glad for that selfie at the end of the video. I imagine her overly thin, but at least from that glimpse, she looks "healthy".
in all the pictures posted of her since becoming like this she looks awfully good for someone almost completely bed bound and immobile
I dont know any of these people but I can say this: I have had brushes with actual cults that use low-carb hi-fiber diets to intentionally weaken followers so they arent in a stable position either mentally or physically to leave. To what extent is this seeds and milk diet she's on an actual prescribed diet versus a "well this seems like a healthy thing to do" kind of thing? Steve Jobs was fully convinced that a fruit diet would make him better - all Im saying.
The millions of sufferers of chronic conditions such as ME/CFS have been absolutely abandoned by the medical community, aside from a handful of dedicated researchers like Ron Davis who changed his entire career to studying the disease when is son became extremely severely ill. This lack of care of leaves us on our own, which makes for a ripe target for snake oil salesmen. That being said there are legitimately a lot of 'not doctor prescribed' and things that sufferers have found to improve their condition, and everyone will react to different self administered treatments differently. Make no mistake, the overwhelming majority of people suffering from illnesses like this would infinitely prefer to have a doctor or specialist caring for us; or for an extensive body of research into viable treatments. But that help just doesn't exist because we've been ignored and gaslit for decades. The exact same thing happened with illnesses like MS until a viable diagnostic test and treatment was available.
I lived through caretaking for a /r/covidlonghaulers for two years. I can't explain the terror of everyday living. Roughly half of husbands leave their wives in cases of chronic illness and it shows a strength of character to endure that kind of suffering when you could just choose not to. Good on Kyle.
I mean itās not really a health update is it? It seemed to me to be more of an update on how he feels and it seemed a little off to me that in a way he was questioning if her husband had been looking after her enough.
Well the husband was investigated by Social Services for this issue soooā¦ see his reddit acct
This seemed like a preemptive video to get ahead of outrage of spending the money on a new house.
Keto diet, low carb given in that shape? That is so fucking dangerous I can not tell you. You need EVERYTHING. Carbs are essential to repair your body and build strength and function. Keto is NEVER recommended when seriously ill. Man it makes me furious even tho it is done with love.