Mastodawn

I know there is unfortunately not a single agreed upon definition for Long Covid. But is there a collection of the various definitions?

I’m trying to look at the progression from Covid infections to Long Covid, and I see a lot of different things going on with the people in my life. It’s so varied that it becomes difficult to talk about with more than one person at a time. They do comparisons, and point out differences.

Is there an up to date resource for multiple Long Covid definitions that can be shared? I have a bunch of links but nothing organized.

#LongCovid #Covid #CovidIsNotOver

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Sarah dreams of beans 1d ago

@VeeRat @noodlemaz This is from 2023 but still the GOAT to me. It lists the different approaches to defining long covid, from all post-covid health impacts and organ damage to the more narrow specific definitions focused on ME/CFS and dysautonomia.

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

Long COVID: major findings, mechanisms and recommendations - Nature Reviews Microbiology

Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and highlight key findings, including potential mechanisms, the overlap with other conditions and potential treatments. They also discuss challenges and recommendations for long COVID research and care.

Nature

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🌊 #woke 1d ago

@VeeRat Unfortunately, it doesn't seem to exist yet, at least none that has a large consensus from the medical or biological community, the patient associations and the health authorities. I just read this long report by Wired on the issue: https://tooting.ch/@ariane/116709779764343202

Autiste à :ch_Vaud:🌊 #woke (@[email protected])

Attached: 1 image The Painful Truth About #LongCovid The conclusion in the printscreen below sums up well one of the long-standing issue with #chronicdeseases and how #publichealth policies adresses them, within a #capitalism oriented-system, which prioritizes #individualism, thus, leaving people face diseases alone if they can't prove that they are not directly responsable for it. It's also steep in psychological #validism, making your mental suffering a simple matter of personal will. https://www.wired.com/story/the-painful-truth-about-long-covid/

Tooting.ch [Swiss instance]

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datum (n=1)1d ago

RE: https://zeroes.ca/@datum/116688446930986267

@ariane @VeeRat The Wired article has very serious problems; if you read or spread it, I urge you to consider this rebuttal https://www.longcovidadvoc.com/post/commentary-on-the-long-covid-article-by-alan-levinovitz-in-wired-magazine and then to spread the rebuttal in whatever streams you sent the Wired piece to.

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🌊 #woke 1d ago

@datum @VeeRat I clearly haven't understood the Wired article the same way as the author of the rebutal, but I'll have no issue spreading it here (I don't have much more online presence than here on Mastodon, on Facebook and Bluesky).

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Robotistry 1d ago

@VeeRat cc'ing @longcovid for hopefully broader reach.

What's the specific problem you're running into? Most of the professional definitions boil down to "I got covid and I'm not back to normal <waves hands at random stuff going wrong with their body and brain>."

Is it that everyone is following a different trajectory of symptom changes, or that everyone is experiencing different and apparently contradictory symptoms?

Because what I've had success with is ignoring the definitions and explaining it as the result of a handful of common causes that manifest uniquely for each person:

"There are several different things going on at once.
- Any previous injuries or pre-existing vulnerabilities represent weak points where inflammation is likely to hit, along with any places the recent covid infection damaged.
- On top of that, it can mess with your immune system. Just like some people are allergic to peanuts and others to pollen or dairy, everybody reacts a bit differently to immune system triggers.
- It can also mess with blood delivery. Blood vessels get inflamed and can't adjust when the body needs more nutrients or waste removal, reducing organ function (and triggering shortness of breath), but where in the body this happens depends on the person.
- And the nervous system gets inflamed, sometimes in the brain, affecting hormones and body temperature or cognition, and sometimes elsewhere, affecting muscles and causing fatigue and exhaustion."

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VeeRat 17h ago

@Robotistry @longcovid I'm running into a couple of things, both related to people in my life who are looking for any other diagnosis than "Long Covid" (primarily, I think, because their doctors refuse to say the word "Covid" or consider Covid as a potential cause of their new health issues, so they can point to their doctors as being more "experts" than me).

There have been multiple types of Long Covid recognized, with different collections of symptoms. Plus different countries or medical facilities seem to define it differently. So if I try to share something, and they have looked it up and found something different, then they use this discrepancy to claim that both descriptions must be wrong and therefore it can't be Covid-related.

Or, if their symptom list doesn't exactly match to a description I share, then they claim it cannot be related to Covid.

I honestly don't know how much it's going to help to have more information. I am not sharing the new links directly, but it's helping with my long term conversations with them, to try and slowly bring them around. Their health issues just keep compounding as they get more and more infections and as time passes. I wonder if hearing more about it is going to harden their resolve, or if it will break it down over time and they'll start to become more receptive. These are the people I'm still choosing to try with (mostly family), so it's hard for me to lose hope.

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Meneer de Bruin 🚂🍉🔻17h ago

@VeeRat @Robotistry @longcovid The WHO wrote a definition in 2021. I believe all countries follow that definition. Or at least I would hope so.

The National Academics wrote a nice elaborate definition in 2024, at least I think so.

It still boils down to 'you had covid, you are now having all kind of issues which hamper your daily live.'

https://nap.nationalacademies.org/resource/27768/Long_COVID_Definition_Highlights.pdf

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Robotistry 16h ago

@VeeRat @longcovid That's tough. I definitely haven't had success in convincing relatives (including close relatives) that their new onset health problems might be long covid-related.

I suspect there's a certain amount of denial - it is *hard* to think that you might be getting progressively worse from something that has no cure and comes with a side of stigma that you have (knowingly or unknowingly) participated in perpetuating, especially when your doctor refuses to confirm it.

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