Brandon Gilles Dies from Long-Covid, Electrical Engineer and Spatial AI Pioneer | Hacker News Reader

Brandon Gilles Dies from Long-Covid, Electrical Engineer and Spatial AI Pioneer

mcphagwara.com

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Found this old interview with him, it's sad to see someone with so much energy taken down.

https://www.youtube.com/watch?v=-DG2LOj8Upw

His long-covid google doc survives him, which I guess is what happens these days

https://docs.google.com/document/d/1X3dNPgEuQ2j8x7w8OqLEDP7l...

(PDF) https://docs.google.com/document/export?format=pdf&id=1X3dNP...

That vaccination timeline is... interesting. But it would be a wild conspiracy to say more.

if you come with facts, without generalisation on one case, we might listen and discuss. But with this kind of speech of 5 words, yup! That won't go far.

That document is incredibly long and I didn’t find any mention of vaccination in the sections I skimmed. What is the timeline you’re referring to?

in the document the author said: Moderna Vaccine as soon as I could get it First dose MODERNA COVID-19 VACCINE April 8th, 2021 ... Second dose MODERNA COVID-19 VACCINE May 6th, 2021 ...

Interestingly as well, his family seems to have a very strong genetic propensity for ME/CFS.

After I wont comment on the timeline, very hard to make a conclusion on a single case, and need to read all the document too.

overall, that document is very interesting, It wont be possible to really conclude anything from it, I think. But surely it could be integrated to other study case to look for correlation or others stuff.

It starts on page 102 on the PDF. I am not sure what's interesting about his vaccination timeline.

What is interesting is on page 105:

As of April 5, 2023 ... And overall, it’s clear from the data of what I can do in a day that I’m starting to recover, now already surpassing average walking from October of 2022.

I only read the timeline and he doesn't describe being anywhere near organ failure over the 2 years described. He also states he had been cleared from multiple specialist physicians which suggests he did not have signs of end-organ dysfunction.

It's hard to understand how this seemingly positive timeline ended in rapid decline and untimely death from multiple organ failure over 3.5 months unless something significant happened.

From the Google doc, he had COVID in 2020 and made a quick and full recovery.

On May 6th 2021 he had his second vaccination and, almost immediately, all of his bizarre health issues began.

Search "COVID-19 January 11th 2020" to jump to this section.

This gets ignored alot in the discussion about long covid.

Curious where you're seeing that?

The PDF document starting on page 102 has the timeline including vaccination and symptoms. It also contains:

- A family history of ME/CFS and schizophrenia

- The author's own experience with ME/CFS

- Successful self-treatment of ME/CFS and pre-schizophrenia

It puts the rest of the document in context.

So sad, we were born in the same year. Interview was great

I wonder how much of what he was taking added to his distressed state. There's a ton of supplements listed there. I understand wanting to get better as I'm also dealing with long covid symptoms (histamine issues, inflammation, etc.) and understand the extreme internal discordance it can cause - I just want to get back to normal! But it's necessary to be cautious with what you throw at yourself, I've personally experienced several negative reactions (sometimes catching them quite late) from supplements I have experimented with in efforts to get well.

I started wondering about the source website I linked and despite the lack of another site with all the information in one place I am not so sure I should have linked it based on the other "articles" on that website.

It's unprovable but feels like it was written by ChatGPT or assisted?

If a better source is found, feel free to either replace the link or delist this thread?

I didn't know Long COVID could cause multiple organ failure and death.

There's isn't just one kind of long-covid but it can via several mechanisms.

There's no scientific term for it but some call it premature aging or radical aging.

It takes awhile to happen, but he caught covid in 2020 so it's been over three years.

What spooks me is he was really intelligent and researched everything about it extensively but it was useless in the end.

There are likely to be more and more people from 2020 and then later with this happening on a time-delay.

Interesting how a crowd of people who rest their faith on "settled science" and "solid consensus" and "proven clinical trials" and "peer-reviewed research" start to pass rumors, exaggerations, and fake news about something that isn't even an ICD-10.

With all respect to Brandon Gilles, I have never heard of "dying from long covid" before and am trying to understand what this means.

There is a huge discrepancy and a lot of detail missing between "developed Long-COVID symptoms such as brain fog, fatigue, muscle pain and shortness of breath" and "he suffered from multiple organ failures".

I tried searching but have not found anything (yes I know some death certificates list long-covid as a contributory cause in CDC data, but one can list anything on a death certificate). Does anyone have a source/case report explaining this or detailing a case?

(Please note I am not trying to start a political debate regarding COVID out of a man's obituary, I am genuinely curious if anyone has information about this as I've never heard a causative claim before)

It was an easy google search ("covid multiple organ failure") with a bunch of responses, including:

https://medicine.wustl.edu/news/repeat-covid-19-infections-i...

https://onlinelibrary.wiley.com/doi/10.1002/jmv.27627

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s128...

All of your sources are about acute or active covid infection. As a physician who worked in an ECMO center during the pandemic I am well aware of severe Covid-19 infections and as I stated in my post I tried searching, specifically looking on: UpToDate, Medscape and Google Scholar.

I am asking about "long-covid", also called "post covid condition". From Brandon's own description he had what would be classified as "mild COVID-19 illness" and was never hospitalized. He had some persistent symptoms that may be attributable to "long-covid", this is very different from your sources.

I have never heard of a death from long-term sequelae in someone who has never been hospitalized.

The first link was about repeat infections. It seems possible that he could have had multiple infections and then that caused MoD?

> As a physician

Oh, you didn't mention that in the first post... I'm sure you know better than I.

> The first link was about repeat infections. It seems possible that he could have had multiple infections and then that caused MoD?

His timeline on the Google document ends in April 2023 when he reported he was slowly improving. It's certainly possible another infection resulted in multi-organ failure and unfortunately his death but that would be "acute covid" and not "long-covid".

> Oh, you didn't mention that in the first post... I'm sure you know better than I.

I don't see long-covid in my practice and hence why I'm asking. I know some of the literature around it and tried searching without success, I'm wondering if someone who knows more can fill in some of the blanks here.

As someome going through something similar to Brandon but a bit less severe let me plant this thought in your process:

The initial covid infection can be a "death blow" for some people, especially if genetically at risk for long-covid (as proven in recent studies)

Just like Brandon I had a near fatal covid infection in 2020, I was on 24/7 oxygen for two months and never fully recovered.

I've stabilized but it is clear I am on a slow but steady decline over the past few years and if this slope continues, I could end up like Brandon.

So if I die in a couple years from Long-Covid, are you going to argue it's not long-covid that killed me or the original covid infection?

Because the damage persists and is getting worse even without active infection.

There are several papers on premature aging (aka radical aging) from covid->long-covid, the ultimate final outcome of that is organ failure and death many years, decades, before one's time.

Look at his twitter and you'll see some of his photos, he was not well and that's three years later after infection.

https://twitter.com/BrandonGilles/with_replies

Covid basically finds every genetic and environmental triggered weakness in the body and doesn't relent in some people. That's long-covid, at least one kind.

> Just like Brandon I had a near fatal covid infection in 2020, I was on 24/7 oxygen for two months and never fully recovered.

He describes that he had mild infection both times and was not hospitalized.

> So if I die in a couple years from Long-Covid, are you going to argue it's not long-covid that killed me or the original covid infection?

I’m not “arguing” anything as this would suggest I have a viewpoint. I’m asking from a medical perspective if anyone knows of a reported case that investigated or described cause of death.

Multi organ failure typically occurs in the ICU in extremely sick people, with an inciting event. I’m not following how ME/CFS leads to that. It could be that I’m uneducated on this, hence the question.

You could swap “COVID” with many other diseases or pathogens and I would be similarly curious. It’s just an unusual progression in a < 40 year old.

> https://twitter.com/BrandonGilles/with_replies

Thanks for providing this, I read back until early June or so.

It looks like he was taking Difficid, presumably for CDAD. Severe C diff can certainly result in multi organ failure and death. Unusual in an antibiotic naive patient and I’ve not heard of a link with COVID.

He also in another tweet states he has hepatic encephalopathy. Is a sign of liver/end organ dysfunction. HE wasn’t on the linked timeline and is very rare in non-cirrhotics but has happened. This would typically be worked up looking for the cause. It would be medically interesting to see a liver biopsy results. Severe liver dysfunction could also explain multi organ failure and death.

Brandon clearly put in a lot of effort when he was alive to publicly document and detail his journey which has been informative for me. My understanding is that he was hoping to increase awareness and provide resources for others. I’m looking for a report to fill in the gaps between what he has shared and his unfortunate death which is medically very interesting.

This is not, and should not, be a debate about the validity of serious COVID illness or CE/MFS which has been established at this point.

That site is bizarre. The text was made unselectable for some reason. It also appears to be a rehash of some other random site.

This is a bit better: https://twitter.com/BrandonGilles/status/1686937347819233280

Interesting, it affirms his timeline in the Google doc that he was improving up to April 2023.

I can't rationalize how any of the symptoms he described, and having undergone many medical tests which were not described as indicating any end-organ dysfunction, would result in to organ failure which I've never heard of happening "out of the blue".

I fully respect his family's right to privacy and of course don't expect a full disclosure. The physician in me is very interested in learning more about what happened in either his or another case. From a medical perspective this is a very shocking turn of events that has not yet been described to my knowledge.

Every other news article from reasonable sources that I could find indicate Long COVID exacerbates underlying conditions (cancer, respiratory diseases, heart disease), or triggers type II diabetes (something to do with the virus damaging the pancreas to tip conditions over some line).

The only place I can find claims for organ failure are on conspiracy forums. I can't put much credence in the idea, yet. (But I'm just a software geek, not a physician.)

I am hoping either HN mods replace my link or someone writes a proper post by human hand.

I kinda regret not taking a deeper look at that website first but at least the news is out and people are talking about it and remembering him.

I wish there was a way to archive all his posts but of course now that's even more impossible given twitter's degradation

https://twitter.com/BrandonGilles/with_replies

While long Covid is an encompassing term, there is symptom overlap between long COVID and ME/CFS. Around 50% of people with long COVID meet the criteria for a diagnosis of ME/CFS.

https://www.nature.com/articles/s41577-023-00904-7

https://www.nature.com/articles/s41579-022-00846-2

https://www.frontiersin.org/articles/10.3389/fneur.2023.1090...

Mild ME/CFS is usually associated with around 50% reduction in daily functioning. Moderate will usually lead to people being housebound and intermittently bed-bound. Severe and very severe are associated with a level of suffering that is hard to imagine possible.

An example of someone becoming severe is PhysicsGirl - Dianna Cowern.

https://youtu.be/vydgkCCXbTA

The associated severe dysautonomia means that people are unable to sit or stand and often they can not eat or digest. They may require intravenous nutrition. Regrettably there are cases where the disease has not been treated appropriately and young people have died as a result. A recent example is Maeve Boothby-O'Neill and her father Sean O'Neill wrote in The Times with an interview with Maeve's Mother by Dr David Tuller.

https://www.thetimes.co.uk/article/my-daughter-couldnt-be-sa...

https://www.codastory.com/waronscience/chronic-fatigue-syndr...

Brandon describes slowly improving over ~1.5 years up to April 2023 when he was walking ~0.9 miles/day which so far is concordant with ME/CFS but where it gets discordant is that he progressed to multi-organ failure and death within 3 months.

I'm not questioning whether he suffered from ME/CFS but mortality is not reported in the Stanford data or what I've heard described of the syndrome.

It's hard to wrap my head around ME/CFS as he has described it being causative of organ failure. Did something happen? Is this a consequence of the therapeutic he tried?

Organ failure in a 37 year old without a history of end-organ dysfunction or acutely inciting event like a toxicity is incredibly unusual.

I agree it's hard to speculate: perhaps malnutrition and cardiac failure; maybe sepsis. Here are some relevant links —

Life-Threatening Malnutrition in Very Severe ME/CFS (2021)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/

There are not many mortality studies and few ME patients have had comprehensive autopsies —

Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome (2016)

https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1...

Causes of Death Among Patients With Chronic Fatigue Syndrome (2007)

https://www.tandfonline.com/doi/abs/10.1080/0739933060080376...

Somewhat harrowing reading is Whitney Dafoe's account of becoming extremely severe —

Extremely Severe ME/CFS—A Personal Account (2021)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/

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