thenerdhead

Trust but verify comes to mind here. I have personally tried to verify this because I work on a project to bring all stories(good, bad, neutral) on novel therapeutics + Long COVID and I have yet to be successful in verifying this with the poster over a couple months.

They told me previously to reach out to a specific Long COVID advocacy group and when I did, that group replied with very limited data as no one had really tried it. Now they are claiming it is a Facebook group with this new post, so something is not adding up here. Let alone all the other public anecdotal and research evidence suggesting the opposite or being neutral. I will continue to try to verify, but I hope you can see why we cannot just trust what is said on the internet as truth.

When/if biomarkers come out, you should do a test for Long COVID. The persistence studies are pretty telling and it is very possible that lingering viral antigen may be causing these issues for you and a large chunk of the global population.

Other folks like me have more syndromic Long COVID where it affects many more organs and it is a bit more obvious that it was a direct result of a COVID infection or vaccination(post vaccination syndrome is absolutely a thing).

No, I am implying that 14k articles were produced on the topic of Long COVID clearly differentiating it from "fibromyalgia". Which is a viewpoint only shared by a select few not even researching the condition.

These syndromes are best described by their respective pathogen: https://www.nature.com/articles/s41591-022-01810-6

EDIT: Sorry, you were talking to someone else. Disregard this comment.

Thank you,

Sent an email.

You can read more on this here:

https://academic.oup.com/nar/article/51/D1/D1512/6814452

Yes there are general challenges in research, but not sure how that really changes the argument that there's significant amounts of research in this area and novel peer-reviewed findings.

Are you referring to this preprint?

https://www.biorxiv.org/content/10.1101/2023.11.21.567575v1

Regardless, you trust a single redditor's comments with no verifiable proof over peer-reviewed science and on-going clinical trials?

Over 14,000 published articles suggest otherwise:

https://www.ncbi.nlm.nih.gov/research/coronavirus/docsum?fil...

Link the study.

These numbers don't look so great long term. Especially the no PCC group. The good news is that recent research suggests we can start aggressively targeting virus in trials:

https://www.nature.com/articles/s41590-023-01724-6

https://www.medrxiv.org/content/10.1101/2023.07.27.23293177v...

There are a lot of exciting trials going on for many different antivirals, monoclonal antibodies, immunomodulators/immunotherapy, and even novel molecules to help clear out viral persistence.

I am starting to collect these budding treatments & patient stories as they come on a website here:

https://www.lctreatments.com/

RIP to Michael Sugrue who just passed away this week. He helped me understand philosophy and he narrates the beginning of this video.

Can I send you a book? My email is on my website in my bio but I cannot find a way to contact you to ask.

In many ways. Like adjusting to the new company's culture. In staying the relevant length to exercise options. In producing at a similar caliber prior to acquisition. The list goes on and on.

As someone with long covid, this is actually a brilliant concept for a book.

I'm sorry HN, but you continue to downplay long covid when there is evidence like this for a biological pathology right in front of you.

Please stop saying it is psychosomatic. Please stop saying only unfit people get it. People stop saying it is caused only by the vaccine.

All of these things do nothing helpful. The science will continue to push through these opinions regardless.

Why can't the discussion be focused on the actual finding here which is that we have a much clearer model of what is causing PEM / exercise intolerance in symptomatic long covid patients versus asymptomatic controls via amyloid deposits, mitochondria dysfunction, and muscle structure changes.

Under some developing models by long covid researchers, they believe that with enough of a "viral load" of persistence in your body(or different areas of your body), it can be the difference of being asymptomatic and symptomatic.

Might be worth looking at https://www.cdc.gov/mmwr/volumes/72/wr/mm7232a3.htm which is more aligned to what this study researched.

Your comment seems a bit cynical or agenda based, but there are already many groups looking into this. i.e.

https://www.medrxiv.org/content/10.1101/2023.11.09.23298266v...

It isn't these researchers job to distinguish every phenotype of long covid as there are other groups trying to figure that out. When those definitions are clearer, I'm sure more upcoming literature will distinguish that. But for now, the current definition are symptom/observational based as we have no biomarker or means to distinguish post-vaccination / infection based long covid yet.

Hey, there is some promise on the horizon. It is very possible that this illness mostly lives in our guts and that with proper drugs or even existing ones, we can build up our gut, take some combination antivirals/monoclonal antibodies, and be potentially reversed.

https://www.medscape.com/viewarticle/monoclonal-antibodies-n...

Also if you want to look at any research easily, go check out my app here:

https://www.longcovidinsights.com/

Feel free to email me if you can find my email on my about page (offer is for anyone struggling)

There isn't much we can do to see if viruses persist in the brain besides an immediate autopsy(which has its flaws). One promising thing I've seen is scanning someone's brain to see brain cell amyloid plaque formations which may indicate an immune response / protection from these viruses. This also could be a means to better understand other diseases like Alzheimer's.

But for other brain researchers with regards to covid/long covid, there isn't strong evidence yet to suggest it can reach the brain outside of the current autopsy studies:

https://www.neurology.org/doi/10.1212/nxi.0000000000200097

Thank you!

I'm giving the government the benefit of the doubt. They have done some good things generally speaking (RECOVER, NIH budget re-allocation($200m), limiting profits of nextgen drugs, etc).

They have done some dumb things too like calling the pandemic over, FDA limiting all use of life-reversing covid therapeutics due to "new variants", and allowing the first-gen covid therapeutics to be priced on the market (look how ridiculous paxlovid is for example or any recent vaccine).

I would not be surprised to see the CDC or NIH director, or even the president come out to talk about the elephant in the room early next year. While actions speak louder than words, I think many afflicted humans want to hear the words part too.

The CDC director and other country health ministers have started to publicly recognize long covid recently. The government is trying to get ahead of the accessibility challenges of potentially life-saving/reversing drugs too:

https://www.whitehouse.gov/briefing-room/statements-releases...

> The Administration is focused on making sure medications developed with taxpayer funds are available to Americans at reasonable prices.

> In September 2023, ASPR finalized a Project NextGen contract agreement for a potentially life-saving COVID-19 treatment being developed by Regeneron stating if the product is commercialized, its list price in the United States will be equal to or less than its retail price in comparable global markets.

The big problem is 100% public perception. We have as a country failed miserably to further message the pandemic's second-order consequences. We need courageous public leaders to message this public health crisis in terms that will get through to people: i.e. economics, productivity, and the anguish of other human beings.

https://scholar.harvard.edu/files/cutler/files/long_covid_up...

The https://johnsnowproject.org/ has been a voice of reason here. We can go further with other innovations like far-UV lights.

https://www.cuimc.columbia.edu/news/new-type-ultraviolet-lig...

I believe Physics Girl is going to make a video on long covid or post-acute infection syndromes soon. Hopefully that can help bring additional awareness here.

> There is also some evidence that some of the significant mutations / new strains arose not from "natural selection" via transmission, but from prolonged mutation in a single host.

I have read a lot of research on this topic and I have not seen this suggestion, rather I have only seen the neutral (that it hasn't mutated from persistence/potential replication in a host).

Do you have a link to a study that suggests this?

Here's 4.5 hours of content from various experts:

https://www.youtube.com/watch?v=278vwGkFXRM

There's many more of these types of videos by the NIH and other large groups too.

There are also reviews here: https://www.nature.com/articles/s41579-022-00846-2

Short answer is...we somewhat have hypotheses around the cause. We don't know much about the lasting damage yet.

Many folks who have long covid do not have any organ damage from acute infection. But the big question is if a persistent infection causes damage over the duration.

I am very hopeful that combination treatment is available today and is just being figured out for safety/efficacy in those who suffer with long covid.

For example look at this study from Italy on antivirals + monoclonal antibodies:

https://www.mdpi.com/2079-6382/12/9/1460

14/15(93%) found viral clearance with a combined therapy.

13 patients were alive, asymptomatic, and negative for SARS-CoV-2 by 90 days. 2 passed away for other causes.

There are other existing literature on these things helping middle-aged people as well such as:

https://www.medscape.com/viewarticle/monoclonal-antibodies-n...

3 lives completely restored back to normal with the use of an existing monoclonal antibody just sitting on shelves.

https://www.sciencedirect.com/science/article/pii/S073567572...

This isn't a perfect treatment that cures everyone, but the efficacy seems rather high and the safety profile already exists given how much this has been given in acute covid during the EUA.

Also there is an upcoming monoclonal antibody that just went into clinical trials for safety that acts like a "pan" mAb which can target all variants with high efficacy by regeneron(look for REGN17092 below):

https://investor.regeneron.com/static-files/a73a7d9c-591d-43...

https://clinicaltrials.gov/study/NCT05923424?intr=REGN17092

Finally, there have been some people participating in the AER002 clinical trial (closest to Lilly's bebtelovimab) where they are seeing complete reversal of symptoms. The challenge is that there is existing literature suggesting both cases where people get better permanently and some people only are better for the duration of the half-life of the drug.

Either way you look at it, treatments are looking closer than ever.

Predictive analysis of Vitamin D deficiency & potential disease progression based on the individual.

Personalized intake recommendations.

Comprehensive health assessments from various health sources (labs, wearables, etc).

Monitoring vitamin trends through health assessments w/ time & overall wellness.

Reading and applying latest research/clinical trials to all the above.

Medicine is going to become more and more personal as we enter the age of AI. Vitamin D may be beneficial for certain individuals but may not show any significance in major populations. The same thing as diets, certain drugs, and other vitamins/minerals. What I find saddening is that certain researchers will jump straight into a RCT of vitamin D for upcoming diseases as if that will do anything of significance. There are some devout vitamin D followers out there just like there were with vitamin C. One of the biggest risks of vitamins is contamination similar to the tryptophan incident in the 90s. Nobody has to prove safety or efficacy to sell them although they are generally safe to use until some accident happens and they aren’t.

> We also are not as ready for the next pandemic as I hoped we would be by now.

He mentions the next 5 years will be crucial. There seems to be a very strong pipeline of initiatives by BARDA and numerous countries with significant investments as well going into it.

https://medicalcountermeasures.gov/nextgen/

Two studies that explore metabolic pathways in different ways. That doesn't mean they "failed to replicate". This happens all the time in science, especially EBV research. For example they failed to find EBV reactivation in long covid in one study, but then also found that it is a smoking gun in others. Aside that, what is your gripe with the Penn study?

Or this:

https://www.medscape.com/viewarticle/monoclonal-antibodies-n...