Talk:Long COVID/Archive 1

Archive 1

Archive 2

Creating the page

While this topic is very much a 'work in progress' - as the science and medicine is moving at such speed and there are so many blanks to be filled in about the long-term consequences of COVID-19, I thought there was probably enough to start having a specific page on the topic, given the publishing of a rapid review by the National Institute of Health Research and the subsequent media coverage. It finally feels that there are enough reasonably sources to start a Wikipedia article - particularly as there's a lot of public interest and discussion on this topic.

I'm UK-based, so I have very much that view of the world, so contributions from elsewhere around the globe would be much appreciated.

Jpmaytum (talk) 15:15, 15 October 2020 (UTC)

Hi Jpmaytum, and thanks for creating the article. I have added some content which I had previously added to the Coronavirus disease article but which was removed on the grounds that the sources did not meet WP:MEDRS, so I don't know what will become of this article. Given the amount of coverage in both popular and medical press, I thought that it should be better covered somewhere in Wikipedia, but the medical editors there did not agree. Let's see what happens to it in coming days and weeks. Laterthanyouthink (talk) 08:10, 19 October 2020 (UTC)

And thanks for your work Laterthanyouthink. I've tweaked the intro to get straight to the scale of the issue (we can leave the general articles to say that that COVID-19 is caused by the virus, and there's a pandemic) and to push the academic references up. I've also added references further down. Little by little we get there!

Jpmaytum (talk) 10:09, 19 October 2020 (UTC)

Coiner

Should we say who Elisa Perego is? We could say "of the UCL Institute of Archaeology"? Should we also move it further down? GPinkerton (talk) 18:12, 20 October 2020 (UTC)

The sentence: "Long Covid" is a patient-made term which was first used in May 2020, during the COVID-19 pandemic, as a hashtag on Twitter by Elisa Perego.

Am I misreading something? I went into the source, and I'm guessing this is the passage where the information is being taken from:

On 7 July, a BBC interviewer asked Suett about ‘this Long Covid, as they call it’ (BBC News 24, 2020a), and the Royal College of General Practitioners noted general practice was ‘preparing for an “influx” of patients with ‘long Covid’ (Royal College of General Practitioners, 2020). 8 July, New Statesman published a piece by a doctor with ‘#LongCovid’ in the standfirst: the hashtag indicated the term’s emergence through social media (Whitaker, 2020).

Perego is the author of the source, but it never says that she made the hashtag for it. —Tenryuu 🐲 ( 💬 • 📝 ) 19:11, 20 October 2020 (UTC)

@Tenryuu: Yes the source wasn't the right one. It's supposed to be that BMJ one. I've added it. GPinkerton (talk) 04:07, 21 October 2020 (UTC)

Though in fact, looking again, the information is two paragraphs above the one cited from the Social Science & Medicine paper. It says:

Long Covid as a term gained consistency in just a few weeks. #LongCovid was first used by Elisa Perego, from Lombardy (a very hard-hit, early hotspot) on 20 May (Perego, 2020), to summarize her experience of disease as cyclical, progressive, and multiphasic. She used #LongCovid to intervene ontologically in formulations of COVID-19 in peer-reviewed papers – by integrating the ‘biphasic’ disease pathway from (Lescure et al., 2020), and pointing to multiple sequelae. In June, #LongCovid became increasingly prominent – complementing other hashtags used by emergent patient collectivities (e.g. #apresJ20 in French, #covidpersistente in Spanish; #MitCoronaLeben in German; #koronaoire in Finnish; #長期微熱組 in Korean; see also patient websites https://www.apresj20.fr and https://apuakoronaan.fi). ‘Long Covid’ moved from social to print media in late June when a newspaper described how doctor Jake Suett had joined a ‘Long Covid’ support group (Keay, 2020). This group (https://www.longcovid.org) changed its name to ‘Long Covid Support Group’ in response to growing use of #LongCovid – having previously added #Covid1in20 to its name on 23 May in response to the COVID-19 Symptom Study prevalence data (personal communication, Claire Hastie, 19 August 2020).

GPinkerton (talk) 04:15, 21 October 2020 (UTC)

@GPinkerton: Thanks for pointing that out; I had Ctrl+F set to look for "Long Covid" and not "LongCovid". —Tenryuu 🐲 ( 💬 • 📝 ) 04:45, 21 October 2020 (UTC)

Keeping it simple

I think the real challenge for this article will be to keep it simple for the casual reader - particuarly given the level of research interest in this area. I've tried to do this by simplifying the initial sections (and there was a great table in the appendix to the Yellin paper which was really helpful) - we can save the more analytical stuff about the research studies (and things like where the name Long Covid came from) for later in the article.

I hope this makes sense - I'm sure there's plenty more to come

Jpmaytum (talk) 11:27, 21 October 2020 (UTC)

Lead

The lead will need more work, as per WP:LEADFOLLOWSBODY, after the article has more content added and undergone more copyediting to smooth the flow and reduce repetition. Boghog, many articles that I have edited have a Background section, and I added it here as a building block in a very young article. The lead as it stands is not a summary of the article, but will get there with more work. IMO opinion it's more useful to keep that "background" info in the body until such time as the article has taken shape - section headings can always be changed to something more appropriate, but the lead should cover just the most important points in a more general way, until the content has been built further. Laterthanyouthink (talk) 13:08, 19 October 2020 (UTC)

Hopefully I've picked up some of this in my most recent edits - see the Keeping it Simple section below. Hope this fits in with your thinking.

Jpmaytum (talk) 11:30, 21 October 2020 (UTC)

Links

I want to add links to this article from some of the main Covid pages, the Covid-19 templates (under health issues?), maybe complications(?) in the Covid-19 infobox, but I am holding off because I'm not a medical expert and don't know to what extent this article is current suitable for wider entry points/under what sections it would belong. Could anyone here with more experience on how to properly integrate this topic maybe add in links in the appropriate templates? BlackholeWA (talk) 15:08, 27 October 2020 (UTC)

Tooth loss is really unclear, and if true, rare

from the given link

A report in The New York Times details anecdotal evidence that the coronavirus can cause unexpected dental problems. People have even had their teeth falling out without experiencing any kind of pain or bleeding.

A 43-year-old woman from New York lost a tooth after sensing it was loose. The tooth just flew out of her mouth one day without warning. There was no pain or blood. The woman had been experiencing Long COVID after surviving an infection in the spring. Her other symptoms included brain fog, muscle ache, and nerve pain.

The report also details the case of a 12-year-old boy who lost one of his adult teeth months after he had a mild case of COVID-19. Unlike the woman, who had a history of dental issues, the child had normal, healthy teeth. Others lost teeth similarly after being infected, describing their experiences in support groups.

That's not enough IMO. Remove it? — Preceding unsigned comment added by 79.76.143.248 (talk) 17:26, 21 December 2020 (UTC)

I have doubts about that too. GPinkerton (talk) 17:32, 21 December 2020 (UTC)

OK I'll remove. 79.76.129.65 (talk) 11:03, 22 December 2020 (UTC)

Done. The hair loss claim needs checking but for later 79.76.129.65 (talk) 11:12, 22 December 2020 (UTC)

Spelling of COVID on this page

Some people have changed the spelling of COVID to Covid - in line with style guides used by some press agencies.

Please ensure the capitalized spelling is used, in line with the World Health Organization spelling. — Preceding unsigned comment added by EpicChefUK (talk • contribs) 20:14, 15 December 2020 (UTC)

@EpicChefUK: Not done: there is no reason for Wikipedia to follow WHO spelling, and indeed, there is a note at the top of the page saying the article is to be written in British English. The WHO uses the British Oxford English Dictionary's spelling on most points, and in this instance the OED uses "Covid-19, n.", with that sort of capitalization. Generally, words which are not initialisms and which are pronounced as actual words are not capitalized throughout, so there is no reason why Covid-19 should be any different. Furthermore, "Long Covid" is how "long covid" is usually written, including by the person who named the disease, the NHS, the British Government, and the BBC. GPinkerton (talk) 21:40, 15 December 2020 (UTC)

@GPinkerton: Please note that the long-standing consensus in WikiProject COVID-19 has been to capitalize all references to COVID, both in the title and the body of the articles. As such, for consistency across the project, the name of the page should also be changed. Demoxica (talk) 19:04, 16 December 2020 (UTC)

Demoxica, does a Wikiproject have that kind of overriding authority? GPinkerton (talk) 01:07, 17 December 2020 (UTC)

@GPinkerton: I'm not sure what you mean by overriding authority -- I simply meant to refer you to the standard established at the WikiProject which has been in use across all articles regarding COVID-19, in an attempt to reach a consensus on the name of the page. Demoxica (talk) 04:27, 17 December 2020 (UTC)

WikiProjects (which are just groups of editors) have no authority. (This is actually in the official policies and guidelines.) WhatamIdoing (talk) 22:56, 26 December 2020 (UTC)

Demoxica, actually, item 1 of the subsection "Page Title" in {{Current COVID-19 Project Consensus}} states:

Coronavirus disease 2019 is the full name of the disease and should be used for the main article. COVID-19 (full caps) is preferable in the body of all articles, and in the title of all other articles/category pages/etc.

As written, this would only be applicable to any mention of COVID-19. "Long Covid" could be considered to be a separate term that describes longstanding symptoms of COVID-19, and can be argued to not fall under item 1. —Tenryuu 🐲 ( 💬 • 📝 ) (🎁 Wishlist! 🎁) 01:50, 17 December 2020 (UTC)

@Tenryuu: Well, long COVID refers to a set of sequelae observed as a result of COVID. We are still talking about the same disease: COVID (shorthand for COVID-19). As we still are talking about COVID, I don't see a reason not to follow the WikiProject standard for this article. The only articles not to follow this guideline are proper nouns referring to products or entities, where affiliated parties have decided to use a different letter case (e.g. Covid fan tutte, Covid-Organics or Covid Watch) Demoxica (talk) 04:27, 17 December 2020 (UTC)

Demoxica, the issue is that none of our sources use that form, so it's verging on OR to conjure it up as a typographic neologism. I note that the linked discussions are now quite old and predate both the emergence of Long Covid science and the advent of the various names for the long-term version/effects. It may be worth having a discussion on this point. GPinkerton (talk) 04:34, 17 December 2020 (UTC)

Again, this is CAW (Consensus As Written). If it should be expanded on that's a discussion for the WikiProject to be having. —Tenryuu 🐲 ( 💬 • 📝 ) (🎁 Wishlist! 🎁) 07:54, 17 December 2020 (UTC)

The acronym LASER has long stopped being written as LASER. DVDs are "written with lasers"; it would look archaic (or seem like we're shouting) to say that they're "written with LASERs". Language evolves. But I agree that discussing it at WikiProject COVID-19 makes sense. COVID-19 is a big topic in en.Wikipedia and in The World. The discussion location is not secret and the discussions are transparent and participatory. Lower-case-isation might be accepted if the usage really is switching in that direction for Long COVID. Boud (talk) 20:30, 27 December 2020 (UTC)

It's usually an WP:ENGVAR question. In British English, pronounceable acronyms are usually not capitalized: They have HIV (not pronounceable, so all caps), which causes Aids (pronounceable, so not all caps). Covid is pronounceable, so it loses its caps. WhatamIdoing (talk) 01:25, 28 December 2020 (UTC)

The article has a {{Use British English}} template, so British spelling should be considered. It honestly doesn't make much of a difference for me. —Tenryuu 🐲 ( 💬 • 📝 ) 🎄Happy Holidays!⛄ 02:40, 28 December 2020 (UTC)

Tenryuu, unfortunately I spoke too soon in this thread; since my first comment NICE has issued its clinical guidance and it uses "long COVID", which I still think is shouty and weird. "Long Covid" was coined using exactly that capitalization (actually "#LongCovid") so it's decapitalized ab initio. "COVID-19" always being capitalized (which I think is dubious in itself) is to my mind a separate issue to wholly capitalizing all and every instance of those letters absent the "-19" and even when in combination with other words (viz. "long" or "Long"); I don't think it was within the remit of the discussions that happened at the beginning of the year to decide on the long-term aspects of the disease(s) nomenclature in the hereafter, especially as at that time it wasn't even known that there was a "long" condition. GPinkerton (talk) 03:04, 28 December 2020 (UTC)

Weak sourcing

This article remains full of weak sourcing. It has improved some since its initial creation, but it still has many primary sources and poor assertions. I would make edits but I'd chop out half the article and imagine I'd risk an edit war. Can you guys review WP:MEDRS and make edits to your sections of interest? MartinezMD (talk) 21:25, 22 December 2020 (UTC)

On that, I removed tooth loss (see right above) and hair loss has no references at all, so I'll remove that now. — Preceding unsigned comment added by 79.76.156.22 (talk) 10:37, 26 December 2020 (UTC)

@MartinezMD, I'd love to see you have a go at this page. Do you have a good source in hand? One solid round of replacing old and weak sources with a recent good source could do wonders for this article. If not, maybe the first step is just to tag the primary sources. Template:Primary source inline can be useful for that. There just aren't very many review articles that focus on long Covid. WhatamIdoing (talk) 23:14, 26 December 2020 (UTC)

That would be my point. There may not be secondary studies or much in the way of reviews making much of the article unreliable. The condition is not even a single condition. It's a concept mixing up various complications, prolonged illness, and likely many unrelated problems attributed to the infection. I'll start tagging. MartinezMD (talk) 23:57, 26 December 2020 (UTC)

I found a decent review article from the BMJ and have started updating based on that. WhatamIdoing (talk) 00:24, 27 December 2020 (UTC)

I removed the entire "Studies" section. It is a collection of primary studies. I also tagged several areas for starters so maybe some can start making changes. MartinezMD (talk) 01:02, 27 December 2020 (UTC)

We *might* be able to salvage some of its opening lines – which were:

A number of studies on the long-term effects of the virus on some people were in progress by late 2020. A wide range of longer-term damage to other organs has been found, including the nervous system, and possibly kidneys, liver, and gastrointestinal tract. Symptoms such as decreased lung and cardiac function and decreased exercise capacity have frequently been recorded. In addition, a range of symptoms of as yet unknown aetiology, such as fatigue, joint pain, "brain fog", and fever, have led to comparisons with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), although distinct from such a diagnosis, which is dependent on other criteria. Doctors are hoping to find specific causes for the symptoms experienced by COVID-19 long-haulers, who include young, previously fit and healthy people, as their treatment will differ depending on the aetiology, which could be lingering infection, autoimmune abnormalities, lung or heart damage, inflammation or other reasons.

– but it amounts to "Researchers are researching", and the rest was a laundry list of individual studies, without any clear rationale for why those were included and others weren't. There probably should be some sentence somewhere that says it's an active area of research, but I'm not sure what else really needs to be said beyond that fact, and I agree with you that the list needed to go. WhatamIdoing (talk) 02:01, 27 December 2020 (UTC)

I'm okay with adding what you propose, but my thinking is like yours. A laundry list wasn't needed. I'm not sure a section is needed, but I don't feel strongly about it. MartinezMD (talk) 02:07, 27 December 2020 (UTC)

It all feels a bit like Further research is needed, doesn't it? I'm not going to add anything about this right now. WhatamIdoing (talk) 02:20, 27 December 2020 (UTC)

• For my part, I think as many studies as possible should be mentioned, but from the perspective of a "history of research" rather than relying on raw material for factual statements. The fact that studies are/have been underway at all is notable and relevant by itself, so I think it's good to make mention of the sequence of events as the condition(s) appeared, grew more numerous and complex, and then began to be formally described. This isn't my area at all and a lot of changes have been made since I looked through the article's contents, so I'm glad someone has reviewed the sources cited. I would prefer if, rather than being removed altogether, sources not used in the text should be relegated to the "Further reading" section I put together (unless they're really useless, unhelpful, or misleading), which I think is useful as a working bibliography of the subject beyond its strictly medical aspects, like when and how it came to be reported and identified, treated, etc. GPinkerton (talk) 18:49, 27 December 2020 (UTC)

There can be hundreds or even thousands of studies eventually. If there are particularly notable studies we can certainly add them in context, but articles about disease fall under WP:MEDRS. They have to be put in perspective because of weight issues - a single study or a few small studies shouldn't be used to generalize to the millions who are at risk. This is the reason for the secondary requirements. MartinezMD (talk) 20:01, 27 December 2020 (UTC)

MartinezMD, I agree that they shouldn't be used to generalize, and probably even the results should be left out, but notable studies by leading institutions have place in the article for historical reasons. WP:MEDRS does say: History sections often cite older work. which I guess in this very new instance means that a History section here would be mentioning (if not citing) reports and studies that are newer than would usually appear in older diseases' articles. GPinkerton (talk) 23:21, 27 December 2020 (UTC)

I don't think we're disagreeing ;) MartinezMD (talk) 23:42, 27 December 2020 (UTC)

NICE appears to have created a systematic review of their guidance: https://www.nice.org.uk/guidance/ng188/evidence/evidence-reviews-8957590381?tab=evidence Unfortunately they are declining to come to conclusions themselves ("these three studies said this etc"). The are including the medrx preprint kcl study in their analysis (somewhat prominently). The prevalence review in particular looks interesting. Talpedia (talk) 03:52, 29 December 2020 (UTC)

There's a lot of potential in these sources, but many aren't there yet. MartinezMD (talk) 04:03, 29 December 2020 (UTC)

References

talk-reflist template added by boud Boud (talk) 20:32, 27 December 2020 (UTC)

Is Long COVID an autoimmune disease? Separate disease from COVID-19?

There have been a few recent study that Long Covid is may have been cause by Autoantibodies as immune goes overdrive after getting Coronavirus, but it is unclear if cause by virus itself. But Long Covid could be a separate diseases as it could be an Autoimmune disease, while Covid 19 is mainly a respiratory disease. It is probably a secondary diseases which usually happened around few week after getting Coronavirus. Autoimmune disease is a condition in which your immune system mistakenly attacks your body. I think Long COVID could be an autoimmune disease due to Immune goes overdrive and it affect other part of body. I left the sources below to help to explain more details about it from www.theguardian.com/science below:

80.233.63.170 (talk) 09:33, 30 December 2020 (UTC)

"Writing in the study, which has yet to be peer reviewed and published in a journal" - nothing to see here until peer-reviewed, published, then reviewed in groupings with other similar studies in a secondary publication. MartinezMD (talk) 14:14, 30 December 2020 (UTC)

References

BMJ source for 10% figure is not reliable

If you follow the link from the BMJ source you'll find that that 10% figure comes from a website (not a paper), and that the website is KCL data which is the basis of the subsequent - unreliable source for the 2% figure. I don't see how one can argue that the 10% figure is reliable and the 2% figure is not given that they likely come from the same dataset (and the 10% figure does not even come from a paper). I'm open to arguments though ... Talpedia (talk) 23:12, 30 December 2020 (UTC)

Thanks @Talpedia:...This NIHR has reviewed some studies but dated October. Whispyhistory (talk) 20:21, 2 January 2021 (UTC)

Unfortunately, within policy, having Wikipedia editors decide that the BMJ didn't have sufficient evidence to make that claim isn't okay. If we want to have different numbers in the article, then we need to find a better source, because the alternative is letting editors do their own peer review of secondary sources.

I hope that we will, in the coming months, be able to make statements about what percentage of symptomatic and asymptomatic COVID cases linger; what percentage are due to ongoing infection; and what percentage are significant symptoms (rather than the sort where you are back to work and feeling normal except for one or two little things). WhatamIdoing (talk) 03:02, 18 January 2021 (UTC)

Hmm, I can see the argument. I guess the question then becomes whether the BMJ sources as a whole is reliable, as it's not a systematic review but more of an editorial by the BMJ. I suppose if I cared to labour the point, I could try and get "using prepublication data from the preprint non-peer reviewed KCL trial" into the sentence (ensuring that this is true first). I definitely detect a spin for people to exaggerte long covid prevalence - but that way madness and meta arguments lie! I suppose the interesting reader could confirm this for themselves... the best source for the interested reader is probably the NICE review on the topic actually. Talpedia (talk) 10:32, 18 January 2021 (UTC)

Instead of trying to qualify this number, I'd rather that we just had a better source. Even just having a different estimate from a similar-ish source would be helpful, as it would help illustrate the "nobody really knows" aspect. WhatamIdoing (talk) 05:32, 20 January 2021 (UTC)

I agree with that. There aren't any secondary sources though :( Talpedia (talk) 06:14, 20 January 2021 (UTC)

The BMJ piece is technically a secondary source. It's just not an ideal one. Wikipedia:Secondary does not mean good. I think the BMJ piece is okay, or I wouldn't have cited it. But I see it as a sort of temporary patch. More papers come out every day. Maybe we'll be lucky and find a good one soon. WhatamIdoing (talk) 06:01, 21 January 2021 (UTC)

But I want a systematic review! (joke) Talpedia (talk) 12:26, 21 January 2021 (UTC)

Sure! Oh, wait – did you mean a systematic review on this subject? That'll be harder. Can I get back to you in a couple of years with that? ;-) WhatamIdoing (talk) 04:03, 24 January 2021 (UTC)

Infobox for Long Covid?

Long Covid
Other names	Chronic COVID syndrome (CCS) Post acute coronavirus syndrome Long Haulers
Specialty	Sequelae * immunology
Symptoms	Fatigue, chronic cough, brain fog, breathless
Complications	Out of work, lifestyle restrictions, heart and lungs failure, post-exertional malaise, neurological problems
Usual onset	2 to 4 weeks after or during infection from coronavirus
Duration	Long term or lifelong
Causes	Unknown, possible autoantibodies after getting coronavirus
Treatment	None, supportive care
Frequency	10% to 33% after getting Coronavirus

Created an example of the Summary Infobox for Long Covid on talkpages as agenda before adding on Long Covid Wikipedia page. I found some sources on symptoms, comlications and causes. While Coronavirus (Covid-19) is a respiratory and infectious disease, it can lead 10% to 30% of some parents to Long Covid, mostly with moderate to severe coronavirus symptoms. Even a few with mild symptoms can go on to Long Covid. There is a bit of different between coronavirus and Long Covid. Coronavirus (Covid-19) is mainly an respiratory disease which affect the lungs and Long Covid is a secondary disease or sequelae or possible immunity disorder which is maybe cause by immune systems goes into overdrive or cause by autoantibodies. Should we Infobox for Long Covid as an summary?80.233.59.188 (talk) 17:15, 16 January 2021 (UTC)

Not sure about frequency figures - newspapers probably aren't the best source. You might like to have a look at the NICE long covid systematic review for this. Talpedia (talk) 18:50, 16 January 2021 (UTC)

I have no opinion on whether the article should have an infobox, but the "Specialty" item here is wrong. Sequelae is not a medical specialty. This condition likely does not have a single specialty associated with it yet, but if we had to pick one, then for the longest group, thinking about some common symptoms, it might be rheumatology. WhatamIdoing (talk) 02:57, 18 January 2021 (UTC)

Don't know about an infobox either, but if added, the sources cannot be news articles WP:MEDRS. Also, complication cannot be "out of work" and duration should not be "lifelong" as 1 - the illness has only existed for 1 year and by precedent we don't do that for other illnesses - see stroke for comparison. MartinezMD (talk) 16:08, 29 January 2021 (UTC)

References

Convergent terminology?

First off, I want to thank the editors that got this article started for a problem that's been around for a while.

In the lede, there are currently two mentions of "long-haulers":

• In the first paragraph: In the US, sufferers are often referred to as "long-haulers" (emphasis removed)
• In the third paragraph: There have been many reports of findings of these longer-term effects from all over the world, in patients often referred to as "long-haulers".

both of which use different references.

My question is: can we combine the two sentences together? I assume the separation is either because information is being inserted as it is found or the distinction is important. —Tenryuu 🐲 ( 💬 • 📝 ) 21:48, 19 October 2020 (UTC)

It looks like the former. GPinkerton (talk) 21:52, 19 October 2020 (UTC)

Hi Tenryuu. This has happened because Boghog removed a section heading (see my comments above), so the first section, which was entitled "Background" got absorbed by the lead. It is usual to have repetition of lead content in the body, so if the header is reinstated, this would help to structure the article correctly. Laterthanyouthink (talk) 22:45, 19 October 2020 (UTC)

Laterthanyouthink, thanks for the clarification. Until another section is created, I've consolidated the two together as one sentence and merged references together. —Tenryuu 🐲 ( 💬 • 📝 ) 23:45, 19 October 2020 (UTC)

I am not sure if long term consequences of COVID-19 and Long COVID are necessarily the same thing. There seem to be a number of research articles talking about the long term effects (heart disease, lung issues, diabetes), but to me that is not the same thing as someone who suffers from COVID effects for a long time. Should I start a new section for this? Azb24 (talk) 20:33, 1 February 2021 (UTC)

Merge with COVID-19 long haulers

I'm requesting a merge of this page and COVID-19 long haulers as I feel both pages cover similar enough ground.Americanfreedom (talk) 01:53, 27 January 2021 (UTC)

• Support. Clearly the same subject. A merge will help keep all the information and references in one place for this emerging topic.Lineslarge (talk) 15:22, 28 January 2021 (UTC)
• Support per lineslarge Talpedia (talk) 16:44, 28 January 2021 (UTC)
• Support. The other can remain as a redirect. Laterthanyouthink (talk) 07:43, 29 January 2021 (UTC)
• Support and WP:SNOW -- {{u|Gtoffoletto}}  ^talk 12:43, 29 January 2021 (UTC)
• Support other article is 5 sentences long and has no new information. Speedy merge imo. MartinezMD (talk) 15:09, 29 January 2021 (UTC)
• Support. There are already more than enough articles about COVID-19, might as well get rid of unnecessary ones. Wretchskull (talk) 12:23, 31 January 2021 (UTC)

 Done by the powers vested ... etc. GPinkerton (talk) 14:36, 2 February 2021 (UTC)

Meta analysis preprint

• [1] Not yet formally accepted but looks interesting and potentially MEDRS once published. 2602:24A:DE47:BB20:50DE:F402:42A6:A17D (talk) 04:55, 3 February 2021 (UTC)

WHO report on LONG COVID

https://apps.who.int/iris/bitstream/handle/10665/339629/Policy-brief-39-1997-8073-eng.pdf

A lot of MEDRS information in there that can be added to the article. -- {{u|Gtoffoletto}}  ^talk 19:26, 25 February 2021 (UTC)

Intermittent or relapsing fever

Quite a few sources on long Covid mention that the fevers are intermittent or relapsing. Is this sufficiently well developed to include in the article? Abductive (reasoning) 20:09, 2 March 2021 (UTC)

I don't see why not, Abductive - it's mentioned in a lot of articles, and listed on the CDC list of symptoms. (The whole article is an odd one because of the lack of MEDRS, but imo that's because of the nature of the beast; the topic still needs to be covered in Wikipedia because of the sheer volume of information published about it.) I just don't have time to do more about it now. I'm sure that some of the Further reading citations could be uses as sources too. Laterthanyouthink (talk) 07:18, 3 March 2021 (UTC)

Post-acute COVID-19 syndrome

Nalbandian, A., Sehgal, K., Gupta, A. et al. Post-acute COVID-19 syndrome. Nat Med (2021). https://doi.org/10.1038/s41591-021-01283-z

2600:1000:B02A:338:B979:35BF:6026:3F3D (talk) 13:39, 7 April 2021 (UTC)

added to reading --Whywhenwhohow (talk) 05:48, 8 April 2021 (UTC)

Self Diagnosis

Long COVID is a self diagnosed condition. There is no such thing in any clinical 'handbook'. "Long" viral respiratory illness is not unique to SARS-CoV-2. Post viral fatigue syndrome is not unique to this pathogen. So, why the new name for something that is old news?

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-017-4968-2 https://pubmed.ncbi.nlm.nih.gov/2553945/ — Preceding unsigned comment added by Maximum70 (talk • contribs)

Are you proposing an edit to the article or are you just commenting? This is WP:NOTAFORUM. Also, please sign your comments. MartinezMD (talk) 01:25, 25 May 2021 (UTC)

Incidence in related virus

I propose we add to the Incidence section some information from the sequalae found in a similar disease, SARS, as a point of comparison. Here is one such study. Forich (talk) 19:36, 5 July 2021 (UTC)

Article falls under discretionary sanctions enforcement?

This article falls under WP:COVIDDS Arbcom discretionary sanctions. It would be unfortunate if this article was edited with misleading information, as this is an important topic. Would an edit notice be appropriate to inform users of the importance of adhering to WP:RS and/or informing them of the sanctions on this page? Thanks. –Gladamas (talk · contribs) 21:09, 30 June 2021 (UTC)

Hi Gladamas, thanks for asking. I have extended-confirmed protected the page for now. The template at {{Ds/editnotice}} is only applicable if there are specific page sanctions that go beyond this level of protection, and I currently see no need to apply such a sanction. You may, however, always request sanctions at WP:AE if this measure turns out to be insufficient. ~ ToBeFree (talk) 19:30, 5 July 2021 (UTC)

@ToBeFree: Do you think semi-protection would be more appropriate (due to WP:MEDRS violations)? Unlike many other articles related to COVID-19, this one is more of a work-in-progress. I worry that extended-confirmed protection would drive off editors that want to add journal sources to this article. Thanks –Gladamas (talk · contribs) 01:04, 28 July 2021 (UTC)

Relationship to chronic fatigue syndrome/ME

Scientists have pointed out the relationship between long covid and ME. Some even say that some of those with long covid will develop ME (myalgic encephalomyelitis). Frenchfries124 (talk) 10:36, 12 July 2021 (UTC)

Needs reliable medical sources - see WP:MEDRS MartinezMD (talk) 18:20, 12 July 2021 (UTC)

Long Covid is definitely a physical illness but, like Chronic Fatigue Syndrome, it seems to have psychological aspects. This should be made clearer in the wiki entry:

> * Gaffney, Adam (22 March 2021). "We need to start thinking more critically — and speaking more cautiously — about long Covid". STATnews.com. > > * Ritchie, Stuart (30 June 2021). "Does Long Covid really exist?". Unherd.com.

It's going to take a long time to sort LC out. It is a poorly defined illness, likely several conditions lumped under one name. It is named poorly - e.g. if someone's nerves are damaged from diabetes we call it neuropathy, not "long diabetes". And with any difficult to test condition, you will have a percentage of people who have any combination of different long-term effects from the illness, similar illness but from another cause, or do not have the illness but for various reasons say or believe they do. Your sources raise good questions, but they do not meet WP:MEDRS. It will be a few years before there is enough investigation to determine some of this and likely never have them all questions answered. MartinezMD (talk) 17:33, 3 August 2021 (UTC)

Rename page title

Title should be renamed to Long-Term effects of COVID-19 as “Long COVID” is a shorthand term AlienChex (talk) 08:28, 5 August 2021 (UTC)

No Long COVID after vaccination?

I don't understand this lede sentence. As some people will still show symptoms of COVID-19 after vaccination (if they're particularly unlucky or immunocompromised, for example), are we saying that in all of those cases where people still contracted less severe cases of COVID-19 after vaccination, no long COVID resulted? How do we know that? Psiĥedelisto (talk • contribs) ^{please always ping!} 12:33, 10 August 2021 (UTC)

I think they are trying to say the vaccine won't give you COVID/Long COVID. Sort of like the misconception that you can get the flu from the flu vaccine. The sources do not make that statement and really is a little bit of WP:SYNTH. It really isn't applicable so I will delete it. MartinezMD (talk) 22:03, 10 August 2021 (UTC)

Request adding new findings regarding long covid

a new research in Jordan identified more risk factors for post-COVID-19 and other important characteristics. You can check the research here : https://www.researchgate.net/publication/353982632_Risk_Factors_and_Characterization_of_Post-COVID-19_Syndrome_in_Jordan 188.247.75.86 (talk) 11:39, 19 August 2021 (UTC)

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. ScottishFinnishRadish (talk) 11:48, 19 August 2021 (UTC)

A new metanalysis published in Nature (Scientific reports) that included 80,000 children in more than 9 different countries reported that the incidente in children of long-covid is 25% and that the main signs and symptoms are mood changes, headache and sleep disorders.

— Preceding unsigned comment added by FEMALEMD (talk • contribs) 16:56, June 26, 2022 (UTC)

References

Please update with: "Long covid—mechanisms, risk factors, and management"

This could be the first comprehensive scientific review about long covid in general including research about possible treatment etc. Likely there are lots of information and overviews in it that could be used to improve the article. Please add some info about its findings to the article. Maybe the review should also be linked in the external links. It's currently featured in 2021 in science like so:

A scientific review summarizes studies about long COVID.

--Prototyperspective (talk) 20:27, 23 August 2021 (UTC)

References

Please add ME/CFS (Chronic Fatigue Syndrome) as a "See Also" link on long COVID

There appears to be a lot of overlap with long COVID and ME/CFS if they are not the same infection triggered / post infection illness. Please add a "See Also" link on the Long Covid wiki article to Chronic Fatigue Syndrome --INaVanDownByTheRiver (talk) 19:41, 5 September 2021 (UTC)

References

Extended-confirmed-protected edit request on 7 September 2021

Please add ME/CFS Chronic Fatigue Syndrome as a link in the "See Also" section of long COVID. There is data to support overlap with long COVID and ME/CFS if they are not the same infection triggered / post infection illness. I can site more journal articles if needed but see the following. I have put this request in the talk section as well. Thank you. INaVanDownByTheRiver (talk) 14:18, 7 September 2021 (UTC)

 Partly done: This isn't appropriate as a see also link, but as it's mentioned in the article, I've added a link to the Chronic fatigue syndrome page. Elli (talk | contribs) 22:17, 9 September 2021 (UTC)

References

New U.S. study

https://recovercovid.org/ Mapsax (talk) 02:17, 20 September 2021 (UTC)

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2784918 October 13, 2021 Short-term and Long-term Rates of Postacute Sequelae of SARS-CoV-2 Infection. A Systematic Review --Sti (talk) 14:40, 15 October 2021 (UTC)

Extended-confirmed-protected edit request on 11 November 2021

typo: change "fom" to "from" 209.204.199.83 (talk) 08:12, 11 November 2021 (UTC)

 Done ScottishFinnishRadish (talk) 11:49, 11 November 2021 (UTC)

Treatment for loss of taste

Anecdotal evidence suggest that chiropractic Atlas lower-back massage can restore sense of taste. Please add to the "treatment" section of the article.

https://www.foxnews.com/us/houston-taste-covid

 Not done: Anecdotal evidence does not get added to medical articles. ScottishFinnishRadish (talk) 14:01, 11 November 2021 (UTC)

Autophagy as a link between SARS-CoV-2 and Cancer

There is a recent paper published in a well-known journal in the field of oncology regarding Autophagy being a potential link between SARS-CoV-2 and cancer (https://www.mdpi.com/2072-6694/13/22/5721). Prof. Daniel Klionsky (https://en.wikipedia.org/wiki/Daniel_J._Klionsky) a well-known scientist in the field is among the authors of this work. Should this proposed link be included in this Wikipedia page as well? --Autophagy1962 (talk) 09:43, 19 November 2021 (UTC)

Heck no. Way too premature and not vetted by secondary reports. MartinezMD (talk) 16:54, 19 November 2021 (UTC)

Epidemiology edit

Some reports of long term illness after infection appeared early in the COVID-19 pandemic and can be thought of as the time difference between microbiological recovery from COVID-19 and clinical recovery as patients with Long COVID are generally PCR negative. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8056514/. The reports included people who had a mild (not requiring hospitalization) or "moderate" (requiring oxygen supplementation) initial infection as well as those with more severe infection with about 40% of patients who reported Long COVID symptoms 3-6 months after infection not reporting them in the first 3 months emphasizing the remittent and not necessarily continuous nature of the diagnosis. https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003773#pmed-1003773-g005. — Preceding unsigned comment added by ‎Gracesweeney (talk • contribs)

WHO definition

https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1

https://doi.org/10.1016/S1473-3099(21)00703-9 Kaihsu (talk) 11:32, 7 January 2022 (UTC)

typo/grammatical error

"without fully understanding the effects of the Omicron variant's effects yet"

could someone fix this, I don't have permissions Adhiyana (talk) 11:07, 14 January 2022 (UTC)

 Done. Thanks for pointing it out. —Tenryuu 🐲 ( 💬 • 📝 ) 17:03, 14 January 2022 (UTC)

Microclots

I'd like to suggest a new item in the "Causes" section in the bulleted list following "Other situations that might cause new and ongoing symptoms include:". New item as follows:

• Inhibited oxygen exchange as a result of persistent circulating plasma microclots; Xavier-FUTURE (talk) 20:18, 11 January 2022 (UTC)

References

 Done ––FormalDude talk 10:22, 15 January 2022 (UTC)

Autoantibodies

I'd like to suggest a new item in the "Causes" section in the bulleted list following "Other situations that might cause new and ongoing symptoms include:". New item as follows:

• Development of various autoantibodies after infection;

References

Xavier-FUTURE (talk) 15:53, 17 January 2022 (UTC)

 Done ––FormalDude talk 02:19, 18 January 2022 (UTC)

Remove "Treatment" from sections until added

The "Diagnosis and Treatment" section contains nothing on treatment, only talking about XenonMRI. I ask the section be renamed until information about effective treatment. I'm not familiar with any treatments that were shown as effective yet. 89.216.154.41 (talk) 14:36, 18 January 2022 (UTC)

"Diagnosis and Treatment" is a standard title for this type of section. I don't specifically object to renaming the section to just "Diagnosis," but I think it'll just mean we change it back when treatments are available, so it's a wash. — The Hand That Feeds You:^Bite 21:45, 18 January 2022 (UTC)

Extended-confirmed-protected edit request on 22 January 2022

In the Diagnosis section, the Journal of the American Medical Association Internal Medicine study should be cited (https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2785832), concluding from a cross-sectional study of 26,000 patients that long COVID is idiopathic and psychosomatic (i.e., has no causative relationship or existence). Jwwallace (talk) 02:32, 22 January 2022 (UTC)

It would be a mischaracterization to say that. The article specifically points out several limitations. MartinezMD (talk) 03:06, 22 January 2022 (UTC)

But clearly this study should be included in the topic; to omit it would be a mischaracterization to a greater degree. — Preceding unsigned comment added by Jwwallace (talk • contribs) 03:32, 22 January 2022 (UTC)

This is a study based on self-reported symptoms that in half the cases did not even have COVID to begin with. I do not see where it would fit in the article. These people do not have long COVID since they did not have COVID to begin with. MartinezMD (talk) 04:07, 22 January 2022 (UTC)

And that's the insight of the study (and this topic): The individuals that thought they had long COVID did not have COVID, and the ones that actually had COVID did not report long COVID. Long COVID, within the limitations reported in the study, was observed to be idiopathic and psychosomatic, with no clinical evidence supporting its existence. In fact, the only symptom positively correlated with COVID was anosmia. Long COVID is associated with the belief that one had COVID, not at all with the actual existence of COVID. Failing to report research of this importance by an organization of such strong credibility (JAMA) flies in the face of the scientific method. Given the structure of the Wikipedia entry, the Diagnosis section is best suited to reporting this study. Jwwallace (talk) 05:32, 22 January 2022 (UTC)

It's a single/primary study, but if carefully worded it would fit in the diagnosis section. Do you have any proposed phrasing? And you don't have to keep changing the tag to not answered. We'll keep replying if you continue the conversation. MartinezMD (talk) 07:03, 22 January 2022 (UTC)

Additional name

I think this can also be called Long COVID Syndrome (LCS). 173.88.246.138 (talk) 04:01, 30 January 2022 (UTC)

Xenon MRI research

The aformentioned research under Diagnosis has its preprint released. — Preceding unsigned comment added by 210.10.1.127 (talk) 16:32, 31 January 2022 (UTC)

Adding info on NIH RECOVER

I suggest adding the following in the first paragraph on the US response.

The NIH Initiative is known as RECOVER (Researching COVID To Enhance Recovery), and it is funded by a $1.15 billion appropriation provided by Congress in December 2020. — Preceding unsigned comment added by Yogafogie (talk • contribs) 21:29, 4 March 2022 (UTC)

References

Long Hauler - Visual Changes (Symptom) and Neurological Disorders (mechanism - under causes) should be added.

I've come to this article several times myself as a longhauler and have been surprised that "visual changes" has not been listed as a symptom. It is a heavily and a well documented complication ranging from blurred vision, double vision, and the likes. The mechanism is still unclear (perhaps ocular motility?) but most information points to nerve damage: https://www.livescience.com/nerve-damage-cornea-long-covid.html

Information is also increasingly highlighting neurological disorders as a main mechanism (dysautonomia, neuropathy) of long covid (ANS, vagus nerve), which is not listed as a possible cause.

I myself have vision issues and prior to being a longhauler had 20/20 vision and never wore glasses. Though anecdotal, I have read hundreds of others having the same issue post exposure.

Made an account to relay this information as I would not be as effective in scholarly sourcing as the existing editors are. But I feel it should be invested in and hopefully an addition to this article. — Preceding unsigned comment added by Unknowndust (talk • contribs) 17:44, 12 March 2022 (UTC)

Extended-confirmed-protected edit request on 24 March 2022

Under the headline: "Causes", following the sentence: "It is currently unknown why most people recover fully within two to three weeks and others experience symptoms for weeks or months longer.[65] Although the exact processes that cause long COVID remain unknown, a number of mechanisms have been suggested." - newest evidence for a dysfunction of the vascular endothelium in Long COVID should be added (https://pubmed.ncbi.nlm.nih.gov/35317812/). Template: In March 2022 a study by the Charité Berlin[[2]] provided first evidence for peripheral endothelial dysfunction in Long COVID. Martin Fredrick (talk) 10:47, 24 March 2022 (UTC)

 Not done for now: It's just another "mechanism suggested." There's no reason to include this until there is more evidence. ScottishFinnishRadish (talk) 11:10, 24 March 2022 (UTC)

References

Viral persistence

Persistence of fragments or whole virus has gained interest as a Long Covid theory over the last few months, including in a Stanford paper that suggests gastrointestinal tract persistence as long as 7 months post-infection, along with links to gastric upsets. This important pathological feature can also be included in the main SARS-CoV-2 article if possible.210.10.0.187 (talk) 12:36, 17 April 2022 (UTC)

"273,618 survivors"

To explain my reversion of the preceding edit by User:Seaweed : 'survivors' is the exact term used in the cited paper and precisely designates the cohort of subjects who were diagnosed (not "diagonised"!) with COVID-19 and lived to tell the tale. -- Jmc (talk) 21:07, 29 April 2022 (UTC)

100 million?

Per article:

As of mid-October 2021, more than 100 million people had or currently have Long COVID.

WebMD is not exactly WP:MEDRS, and the study cited by WebMD (Chen et al. 2021) is a preprint. I think it the sentence should be removed for now, until a better source is found for the number. ~Desaccointier 14:02, 8 May 2022 (UTC)

References

Agreed. Preprints are not to be used. I removed the sentence until a validly supported statement can be inserted. MartinezMD (talk) 07:59, 9 May 2022 (UTC)

Extended-confirmed-protected edit request on 5 May 2022

In May 2021, a global systematic review led by researchers at Stanford University reported that a wide variety of symptoms persisted in more than 70% of COVID-19 patients months after recovering from the initial phase of the disease. A majority of the studies reviewed focused on patients who had been hospitalized with COVID-19. The most common lingering symptoms included shortness of breath, fatigue, cough, and depression and/or anxiety. The study reviewed 84 clinical signs or symptoms, including atypical chest pain, fever, loss of smell of taste, and cognitive disorders such as memory loss and difficulty concentrating. 75.235.226.47 (talk) 11:37, 5 May 2022 (UTC)

References

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. —Sirdog (talk) 02:52, 15 May 2022 (UTC)

Viral fragments and persistence - edit request

I'd like to suggest a new paragraph in the "Causes" section. Above the paragraph that starts with 'A March 2021 review article...', I'd like to suggest a new paragraph as follows:

A May 2022 review article discusses viral fragments (RNA and protein) found in non-respiratory reservoirs like the gut for prolonged durations, and suggests that the persistence of replication-competent virus may contribute to long COVID.

References

Xavier-FUTURE (talk) 14:42, 12 May 2022 (UTC)

 Not done for now: please establish a consensus for this alteration before using the {{edit extended-protected}} template. Dr.Pinsky (talk) 07:41, 22 May 2022 (UTC)

Mistake on blanking a section of the article

Sorry, that was an inadvertent deletion of content from the page on June 23. I screwed up.Whoisjohngalt (talk) 19:54, 23 June 2022 (UTC)

Thanks for the explanation. I was wondering if your account had been hacked and turned into a bot ScienceFlyer (talk) 20:30, 23 June 2022 (UTC)

Epidemiology section needs major rewrite

This section is full of unnecessary details on the past research made on long covid. By now, we are almost three years after the initial outbreak, and we can produce an epidemiology section that is short with solid knowledge of prevalence, incidence, morbidity, geographical distribution, etc; and a separate "Ongoing research" section with the important facts that are being discovered with new studies. Forich (talk) 16:57, 19 July 2022 (UTC)

Treatment Trials

There are already publications regarding treatment available. Case reports, pilots and randomised trials. I would suggest to this as a topic? 194.230.148.122 (talk) 17:32, 25 June 2022 (UTC)

Depends on if the sources are WP:MEDRS-compliant. Are there any reviews or meta-studies that consolidate trials/case reports? —Tenryuu 🐲 ( 💬 • 📝 ) 18:26, 25 June 2022 (UTC)

I think this review on registered trials may be useful. It's a review on the type of interventions, but no information about efficacy yet, as clinical trials are just starting to report results.. Femke (talk) 19:07, 27 July 2022 (UTC)

References

Edit Request

Sequelae in the lede should be wikilinked. --SchallundRauch (talk) 11:26, 1 August 2022 (UTC)

In the first sentence, the word consequences links to sequelae. I've now explained in the second sentence what sequelae are. Femke (talk) 16:01, 1 August 2022 (UTC)

Public Response

Update citation on dismissal faced by patients from medical professionals who do not believe that Long Covid is real https://www.sciencedirect.com/science/article/pii/S2667321522001299 Binu112 (talk) 22:16, 20 September 2022 (UTC)

Long-COVID in Scotland Study report

Outcomes among confirmed cases and a matched comparison group in the Long-COVID in Scotland study Mapsax (talk) 01:49, 14 October 2022 (UTC)

Treatment Experiments

https://www.reuters.com/business/healthcare-pharmaceuticals/addiction-drug-shows-promise-lifting-long-covid-brain-fog-fatigue-2022-10-18/ 2600:8804:6600:45:D4B9:3263:D519:E912 (talk) 17:20, 19 October 2022 (UTC)

Good news that there will be multiple studies on this drug, even if they seem a bit small. We cannot add anything to Wikipedia before the outcome of large-scale trials are published, and preferably described in review papers, per WP:MEDRS. Femke (talk) 17:24, 19 October 2022 (UTC)

Appropriate for U.S. response section?

National Research Action Plan on Long COVID and Services and Supports for Longer-Term Impacts of COVID-19, both US HHS August 2022 Mapsax (talk) 22:13, 21 October 2022 (UTC)

Bringing this to GA

Over the next 6 months or so, I'd like to bring this article to GA. Never written any medical articles, so if there are people willing to help, that would be much appreciated. Femke (talk) 09:44, 2 October 2022 (UTC)

Hi Femke, glad to hear it. I'm happy to help with whatever you need. I probably won't have huge chunks of time to dive into the topic, but if you point me to sections, sources, et al. you'd like a hand with, I'll do my best. Cheers! Ajpolino (talk) 15:37, 8 October 2022 (UTC)

That's very much appreciated. I'm first trying to get a good structure in the article. First question

• I see some disease GAs have a separate section about causes and pathophysiology. What's the difference? And is there a simpler term for pathophysiology?

Femke (talk) 12:26, 9 October 2022 (UTC)

Think Causes and Mechanism as the distinction ... have a look at Tourette syndrome for an example of what goes in each (or dementia with Lewy bodies, but I think the distinction more clear at TS). You've probably seen Wikipedia:Manual of Style/Medicine-related articles#Diseases or disorders or syndromes? SandyGeorgia (Talk) 14:37, 9 October 2022 (UTC)

It's amazing to have a preset structure!

I'm wondering how to organise the 'Health system responses'. At the moment it's a bunch on news about a small set of countries. I don't think it has a place in this article, but we could dedicate a single paragraph in the management section to the existence of long COVID clinics. There is some information about research, but that's too outdated/vague to save. A timeline of events is not really suited to a history section, right?

As an alternative, the section could be split into a new article Health system responses to long COVID. —Femke 🐦 (talk) 17:31, 25 October 2022 (UTC)

Semi-protected edit request on 26 October 2022

Causes: Mitochondria dysfunction and fatty acid metabolism changes IrinaPetracheMD (talk) 12:42, 26 October 2022 (UTC)

@Irina: Thank you for that suggestion. I have posted a mention of this to the article, which I hope you will find acceptable. Let me know if not. JBW (talk) 13:31, 26 October 2022 (UTC)

Grouping the non-scientific further reading?

It seems the Guardian now has a general link of https://www.theguardian.com/society/long-covid and BBC has https://www.bbc.com/news/topics/c6v43w0z9gdt So should individual items be removed in favor of such links? Chidgk1 (talk) 12:36, 18 October 2022 (UTC)

The further reading should certainly be trimmed. However, per WP:further reading, further reading elements should be reliable and balanced. If we link to a repository of lay articles, we cannot guarantee that's the case. Femke (talk) 16:22, 18 October 2022 (UTC)

True but BBC have been trying for 100 years now so I just added them for news for now and deleted the 2020/21 news Chidgk1 (talk) 17:56, 20 October 2022 (UTC)

Hmm.. I think it's a bad idea to remove all patient stories. Even though the BBC's reputation is good, they're not scientists, and their history of featuring climate misinformation does not give me confidence that a random sample of their articles around long COVID are of high quality. Femke (talk) 18:53, 21 October 2022 (UTC)

Further reading isn't quite the same as external links, but WP:ELNOT#9 mentions we shouldn't list search results, and this comes quite close to search results from the BBC website. Femke (talk) 18:55, 21 October 2022 (UTC)

I was probably rushing a bit - I won’t be peeved if you or anyone else reverts any of my changes to this article Chidgk1 (talk) 15:12, 28 October 2022 (UTC)

not sure if the study on Inflammation and dysfunction of the lining of blood vessels that relates to post-covid can be included

Recently, I came across Eric Topol tweet on Inflammation and dysfunction of the lining of blood vessels linking to the nature's article, here's the tweet with the article, do deliberate on including this study if it's reliable "Inflammation and dysfunction of the lining of blood vessels—the endothelium—is the basis for many of the cardiovascular complications of Covid. A new, solid review here https://www.nature.com/articles/s41401-022-00998-0#citeas Kaveinthran (talk) 17:02, 28 October 2022 (UTC)

Post-COVID brain changes seen in MRI scans - Nature

"SARS-CoV-2 is associated with changes in brain structure in UK Biobank" [3] "Here we investigated brain changes in 785 participants of UK Biobank (aged 51–81 years) who were imaged twice using magnetic resonance imaging, including 401 cases who tested positive for infection with SARS-CoV-2 between their two scans—with 141 days on average separating their diagnosis and the second scan—as well as 384 controls. The availability of pre-infection imaging data reduces the likelihood of pre-existing risk factors being misinterpreted as disease effects. We identified significant longitudinal effects when comparing the two groups"

May be too theoretical for Wikipedia. John Nagle (talk) 08:00, 30 October 2022 (UTC)

@Nagle Without data showing how many of the patients are self reporting "long COVID" symptoms, I'm not sure these results apply here. Many post COVID biomarkers are present in those not identifying with long covid as much as they are present in those who do report long covid. Mameyn (talk) 06:26, 26 December 2022 (UTC)

Discussion of psychological distress associated with PASC

Wang et al. shows a 1.3-1.5 times higher risk of self reported PASC in patients who had depression, anxiety or other forms of psychological distress and I'm wondering if this has a place in the article, considering it is one of the few things besides having COVID that we can tie to PASC.

I'm cautious to even bring this up, but these reports have led to discussion that PASC may be in part psychosomatic (Derek Lowe in an infamous editorial for Science Magazine interprets similar results, albeit from a different and somewhat questionable study, as contributing evidence that PASC is a psychosomatic condition) however the prevailing wisdom is that PASC has at least some sort of non-neurological basis, and a UMN article, through not an academic one, cautions against interpreting these results as evidence of PASC being psychosomatic.

Still, the results are interesting, and this is a hint as to what may be behind PASC when we have little other complete data. I want to ask if these results deserve a place in this article, and how they should be presented. I have no experience writing for medical articles, nor have I been to medical school, so any feedback is welcome. Thank you in advance. Mameyn (talk) 06:47, 26 December 2022 (UTC)

Hello @Mameyn. The article already has depression and anxiety as a risk factor from a high-quality source, and post-traumatic stress from a source that does not seem to meet the minimum requirements for medical sourcing on Wikipedia. Unless we have a good review article describing the link, I think that is sufficient.

In general, a medical source needs to be a review article (or academic book/official guideline). As long COVID research is developing fast, we can also use the results of massive studies while we're waiting for review articles to assess them in context. Feel free to propose something here (or WP:BEBOLD and add something to the article with a WP:MEDRS source!).

Given the sensitivity of this issue, we should strive to use the best sources out there. —Femke 🐦 (talk) 18:56, 27 December 2022 (UTC)

Distinct etiologies of PACS symptom clusters

A recently published study in the journal Nature identified at least two distinct etiologies of PACS symptom clusters (pulmonary and "miscellaneous"). Differences in gene expression, as evidenced by cell type specific RNA sequencing, correlated with the subsequent development of post-infection symptoms were apparent at the time of infection. The miscellaneous symptom cluster was comprised of skin rash, smell/taste problems and sleep problems. Pulmonary symptoms were found to be independent of anti-SARS-CoV-2 Spike protein antibody titers while the evolution of the miscellaneous symptom cluster was dependent on antibody titers. This suggests that the emergence of some PACS sub-phenotypes are contingent on separate pathological mechanisms which are observable at the molecular level.

https://doi.org/10.1038/s41591-022-02107-4 MagicTheater (talk) 15:20, 9 January 2023 (UTC)

Semi-protected edit request on 14 January 2023

Addition to top of article: A comprehensive review article published 1/13/23 at https://doi.org/10.1038/s41579-022-00846-2 concluded: "Long COVID is a multisystemic illness encompassing ME/CFS, dysautonomia, impacts on multiple organ systems, and vascular and clotting abnormalities. It has already debilitated millions of individuals worldwide, and that number is continuing to grow. On the basis of more than two years of research on long COVID and decades of research on conditions such as ME/CFS, a significant proportion of individuals with long COVID may have lifelong disabilities if no action is taken. Diagnostic and treatment options are currently insufficient, and many clinical trials are urgently needed to rigorously test treatments that address hypothesized underlying biological mechanisms, including viral persistence, neuroinflammation, excessive blood clotting and autoimmunity." Anan Isapta (talk) 02:45, 14 January 2023 (UTC)

Partially done - it's a good review with educational graphics but there's no need to quote from it. I added the review to the lede. What new information is presented? Most of the review is already represented by other sources in the article. The possible mechanisms mentioned in the Davis review remain speculative. Zefr (talk) 04:26, 14 January 2023 (UTC)

Wiki Education assignment: Comparative Developmental Biology

This article was the subject of a Wiki Education Foundation-supported course assignment, between 9 January 2023 and 21 April 2023. Further details are available on the course page. Student editor(s): Ryanbrown58 (article contribs). Peer reviewers: Blazer GB, Teecuee, JamaalBurks.

— Assignment last updated by JamaalBurks (talk) 15:07, 1 March 2023 (UTC)

Better pic would be Dianna Cowern

A better picture for the article would be one who actually has the condition. Dianna Cowern, Physics Girl, is a well known YouTube personality. I assume she would not object to the picture her account posted on Twitter https://pbs.twimg.com/media/FqRGyTHaIAA12UQ?format=jpg&name=large Nehmo (talk) 04:55, 5 March 2023 (UTC)

We can't assume permission, you'd need to ask. The Quirky Kitty (talk) 06:16, 5 March 2023 (UTC)

Given there are no outward, physical symptoms of Long COVID, I don't see a photo of a person with the condition as very useful for the article. — The Hand That Feeds You:^Bite 16:32, 5 March 2023 (UTC)

Davis et al (2023) article in Nature

According to the new paper by Davis and coauthors, long covid symptoms are often severe. Should we include this fact in the lead? Forich (talk) 22:31, 13 January 2023 (UTC)

Yes, of course. To omit this important fact would have the affect of minimizing this serious problem.

Patients’ lives are often severely impacted for months, years, and possibly indefinitely. In my own personal experience, months out from my initial infection, I was bed-bound, unable to even lift my arm to feed myself and had often had bouts of rasping breathing where I was struggling to catch my breath. Any mental or physical activity compounded the problem, sending me to new lows (post-exertional malaise).

I would highly recommend your consulting with patient advocacy groups on this and other issues related to Long Covid/PASC. Thank you for posing this question. 2603:6080:5807:1AD:4938:EB87:40B4:E530 (talk) 17:10, 31 March 2023 (UTC)

I would highly recommend your consulting with patient advocacy groups on this

That would constitute original research, which we can't use in a Wikipedia article. — The Hand That Feeds You:^Bite 18:07, 31 March 2023 (UTC)

Yes, this is important enough that the lead, which serves as a short summary, should say that long Covid symptoms can be severe. The Quirky Kitty (talk) 06:12, 1 April 2023 (UTC)

I think it should be included in the lead and the “Symptoms” section (and perhaps the “Epidemiology” section). I believe this is recognized as the leading review paper on LongCOVID. Pls let me know if this is your impression, everyone. Eric Topol at Scripps is the last (second lead) author. He’s generally very highly regarded by academic physicians (ie a leading mainstream researcher).

I disagree with @The Quirky Kitty that the text should say LongCOVID “can be” severe. Almost any illness can be severe. This therefor tells us almost nothing. More importantly, it misrepresents the article which says LC comprises “often” severe symptoms. Those are VERY different statements.

Paper text: “Introduction

Long COVID (sometimes referred to as ‘post-acute sequelae of COVID-19’) is a multisystemic condition comprising often severe symptoms that follow a severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection.” JustinReilly (talk) 06:10, 27 April 2023 (UTC)

Amyloidogenic Peptides in SARS-CoV-2 Proteome

Addition to Causes:

Multiple peptides within the SARS-CoV-2 proteome are capable of inducing amyloidosis, a condition that could persist following infection. Amyloid peptides form aggregates and can spread throughout the human body in the absence of infection. These aggregates can disrupt biological processes (https://www.nature.com/articles/s41467-022-30932-1) (https://www.nature.com/articles/s41467-023-36234-4). Whether SARS-CoV-2 can trigger amyloidosis in humans is still uncertain. This is a potential mechanism that might explain post-infection sequelae such as long covid.

Phosphorylated alpha-synuclein was identified in skin biopsies in five patients with long covid postural orthostatic tachycardia syndrome. 4/5 of these patients showed evidence of hyposmia as well. These findings are often associated with synucleinopathies such as REM sleep behavior disorder, an early sign of Parkinson's disease, Lewy body dementia and multiple system atrophy (https://link.springer.com/article/10.1007/s10286-022-00867-0). A seperate study (N=11) demonstrated signs of REM sleep behavior disorder in 36% of patients after COVID-19 infection (https://www.sciencedirect.com/science/article/pii/S138994572100068X?via%3Dihub). Larger studies are urgently needed to confirm these findings. A clinical trial is underway to determine the risk of alpha-synuclein amyloidosis and associated neurodegeneration following infection with COVID-19 (https://clinicaltrials.gov/ct2/show/NCT05401773?term=NCT05401773&draw=2&rank=1). MagicTheater (talk) 15:12, 4 March 2023 (UTC)

Hello @MagicTheater. Wikipedia has strict requirements for medical content. In summary, we're can only use high-quality secondary sources (see WP:MEDRS for more information). Small studies, especially on animals, are generally not enough for inclusion on Wikipedial —Femke 🐦 (talk) 15:24, 4 March 2023 (UTC)

The mdpi source may be a questionable one, but the others are from pretty reputable journals. And they're primary sources, not secondary. Two of them are Nature articles. I'd give the stuff a read through before discounting it. MagicTheater (talk) 20:11, 4 March 2023 (UTC)

The information from the animal studies has been removed. The Nature articles propose a mechanism by which the virus might trigger chronic illness following infection. Amyloidosis would explain the symptoms longhaulers experience in the absence of new-onset autoimmune disease, persistent infection or causally-related tissue damage.

Case studies are discussed that suggest amyloidosis of alpha-synuclein within the peripheral nervous system. These are preliminary findings and need to be validated in larger studies. However, at this point there is at least as much evidence in support of this theory as there is for some of the alternative theories that are already listed in the article. MagicTheater (talk) 00:07, 5 March 2023 (UTC)

@Femke I think this should be acceptable. It references a secondary source instead.

Addition to Causes:

Multiple peptides within the SARS-CoV-2 proteome are capable of inducing amyloidosis, a condition that could persist following infection. Amyloid peptides form aggregates and can spread throughout the human body in the absence of infection. These aggregates can disrupt biological processes (https://link.springer.com/article/10.1007/s13205-022-03390-1). Whether SARS-CoV-2 can trigger amyloidosis in humans is still uncertain. This is a potential mechanism that might explain post-infection sequelae such as long covid. MagicTheater (talk) 18:26, 21 March 2023 (UTC)

I don't see where that paper talks about long covid. The paper mentions MIS-C, but that is considered a separate syndrome, right? —Femke 🐦 (talk) 19:04, 21 March 2023 (UTC)

REVISED. This should meet the requirement for WP:MEDRS. This article provides a systematic meta-analysis of shared biomarkers between COVID-19, and long COVID/post-COVID syndrome, neuroinflammation and neurodegeneration: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10064073/

"Increasing evidence suggests that neurological deficits may develop due to infection with SARS-CoV-2 in a substantial proportion of patients (Heneka et al., 2020). These deficits may manifest acutely and sub-acutely, as well as within the long COVID-19 pathology, and are often referred to as neuro-COVID-19 (Chiappelli, 2020)."

"In total, 98 common miRNAs were found. Additionally, two of them (hsa-miR-34a and hsa-miR-132) were highlighted as promising biomarkers of neurodegeneration, as they are dysregulated in all five most common neurodegenerative diseases and COVID-19. Additionally, hsa-miR-155 was upregulated in four COVID-19 studies and found to be dysregulated in neurodegeneration processes as well."

"Long before COVID-19 pandemics, it was reported that antibodies against coronaviruses can be found in the cerebrospinal fluid of PD patients (Fazzini et al., 1992). Coronaviruses can enter the brain through the nasal cavity causing anosmia or hyposmia (Antonini et al., 2020). The latter is one of the main prodromal features of PD and the α-synuclein deposition in the olfactory bulb, among other locations, is one of the main pathological hallmarks (Kalia and Lang, 2015; Ferini-Strambi and Salsone, 2021), which indicates a strong association between PD and COVID-19. Furthermore, some COVID-19 patients develop cognitive deficits after the primary infection, indicating, that there might be a link between COVID-19 infection and dementia pathogenesis (Ye et al., 2020; Douaud et al., 2022)."

Quotes are from the original article.

Suggested addition to Causes (link between COVID-19, long COVID and neurodegeneration):

Increasing evidence indicates that SARS-CoV-2 infection can lead to neurological deficits in a significant proportion of patients, with both acute and chronic manifestations, including long COVID. SARS-CoV-2 infection is known to cause neurodegeneration, but the exact mechanism is unclear. The virus can enter the brain through various routes, including the olfactory bulb, peripheral nerve endings, and the blood-brain barrier. Infection of neurons and peripheral leukocyte activation can lead to neuroinflammation and neurodegenerative changes.

To elaborate on that initial point, we can include information about how neurodegeneration is induced by COVID-19. By what mechanism does this occur? https://link.springer.com/article/10.1007/s13205-022-03390-1 (This article does not mention "long COVID" specifically and instead focuses on the link between COVID-19 and neurodegeneration mediated through amyloidosis.)

Multiple peptides within the SARS-CoV-2 proteome are capable of inducing amyloidosis, a condition that could persist following infection. Amyloid peptides form aggregates and can spread throughout the human body in the absence of infection. These aggregates can disrupt biological processes (https://link.springer.com/article/10.1007/s13205-022-03390-1). Whether SARS-CoV-2 can trigger amyloidosis in humans is still uncertain. This is a potential mechanism that might explain post-infection sequelae such as long covid. MagicTheater (talk) 17:07, 5 May 2023 (UTC)

I'd like to point that there are instances where primary sources are cited and potentially contain baised information.

Pretorius E, Vlok M, Venter C, Bezuidenhout JA, Laubscher GJ, Steenkamp J, Kell DB (August 2021). "Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin". Cardiovascular Diabetology. 20 (1): 172. doi:10.1186/s12933-021-01359-7. PMC 8381139. PMID 34425843.

Pretorius et al. have been the most vocal proponents of this theory and in fact, they were the ones who proposed it.

https://portlandpress.com/biochemj/article/479/4/537/230829/A-central-role-for-amyloid-fibrin-microclots-in MagicTheater (talk) 17:14, 5 May 2023 (UTC)

This quote is from a source that has already been cited on this page (https://www.nature.com/articles/s41579-022-00846-2)

"Studies have found Alzheimer disease-like signalling in patients with long COVID78, peptides that self-assemble into amyloid clumps which are toxic to neurons79, widespread neuroinflammation80, brain and brainstem hypometabolism correlated with specific symptoms81,82" MagicTheater (talk) 20:42, 5 May 2023 (UTC)

This is all speculative, which violates WP:CRYSTAL. It is not appropriate for this article. — The Hand That Feeds You:^Bite 19:14, 21 March 2023 (UTC)

I'd encourage you to take another look. MagicTheater (talk) 20:42, 5 May 2023 (UTC)

The article needs to be updated

All the references are old (a few are a year old, but many are two-three years old) ...and there is barely any mention of mental symptoms, which are among the more common ones. Nor any mention of how the risk of Long COVID is effected by the mutated variants. (which it hasn't, last I checked. Risk of death or need for intensive care seems to have gotten reduced, but not Long COVID) 155.4.221.27 (talk) 00:53, 25 April 2023 (UTC)

From this dated in Dec 2022, "Undertaking research on a new disease area is always challenging. And understanding long COVID is particularly difficult, because its reported symptoms are highly varied, and don’t fit neatly into current clinical categories. Plus, many people who self-report persistent symptoms were not tested for coronavirus at the time of their initial infection, making it harder to clearly delineate the target patient population. What’s more, the ongoing pandemic continues to disrupt normal working conditions for many researchers."

WP:DOIT: If you have WP:MEDSCI sources, go ahead and edit. Zefr (talk) 02:11, 25 April 2023 (UTC)

So what you're saying, is that the people who have edited the article in the past, have left. There is no one left, who is qualified to, has the time and energy, and willingness, to find and cite new sources, and edit the article accordingly. 155.4.221.27 (talk) 18:29, 25 April 2023 (UTC)

There are 141 Wikipedia editors who watch this article. For widespread diseases with unknown causes, the usual explanation for absence of editing activity is that the article is generally representative of the state of science, and that new research is underway and incomplete - which is what the NIHR was saying in the above quote. Zefr (talk) 19:24, 25 April 2023 (UTC)

That is not what you said, when you said "WP:DOIT: If you have WP:MEDSCI sources, go ahead and edit.". That sentence, is a clear statement, that no one is present, qualified, or willing, to check for any sources, or edit the article accordingly. Not that there are no sources. Indeed, it implies that there are, or may well be, sources. 155.4.221.27 (talk) 05:36, 6 May 2023 (UTC)

Zefr is correct. We're not pouncing on every breathy news story that pops up, we're waiting on WP:MEDRS compliant sources to tell us something new has been discovered on this topic. — The Hand That Feeds You:^Bite 20:16, 25 April 2023 (UTC)

There are plenty of recent studies that would offer actionable insights. A lot of them do not mention "long covid" specifically and instead call it chronic sequelae or long term effects. If you can't objectively diagnose long covid, researchers end up focusing on specific symptoms that are easy to identify. Given the uncertainty, that is a perfectly sound methodology. Those studies should be considered valid sources. We have learned a lot and its unfortunate that this information is not properly represented here. MagicTheater (talk) 18:37, 5 May 2023 (UTC)

Based on WP:MEDRS, this source wouldn't be compliant. However, there have to be exceptions granted. The results suggest that existing neuropsychiatric exams may be adopted as diagnostic tools in long covid. These could be implemented immediately and help a large number of people.

Selective visuoconstructional impairment following mild COVID-19 with inflammatory and neuroimaging correlation findings

https://www.nature.com/articles/s41380-022-01632-5 MagicTheater (talk) 20:39, 5 May 2023 (UTC)

A lot of them do not mention "long covid" specifically

Then we cannot cite them here. Full stop. — The Hand That Feeds You:^Bite 21:22, 5 May 2023 (UTC)

Long covid hasn't been properly defined by any objective measure. That's why the authors do not refer to long covid and focus on the symptoms instead. That's an absurd rationale.

Good luck. MagicTheater (talk) 21:38, 5 May 2023 (UTC)

No, it's entirely necessary due to Wikipedia's policies. If the article does not mention Long COVID, we cannot cite it here on this page. We cannot draw conclusions ourselves. — The Hand That Feeds You:^Bite 19:38, 6 May 2023 (UTC)

You have to realize that makes zero sense. There is no objective way to diagnose long covid, and it's not even clear that it is a single disease. So when researchers do good science they don't start with a poorly defined patient population. They rely on things that can be objectively confirmed like hyposmia, orthostatic intolerance or REM sleep without atonia. Only then can someone say definitively that, "Yes. This disease is unique. Here's how you identify it." No experienced researcher is going to start with the assumption that they already know what long covid is because we still have to figure it out.

That's why none of the recent findings can be included here. That's terribly unfortunate. MagicTheater (talk) 21:25, 6 May 2023 (UTC)

You have to realize that makes zero sense.

It makes perfect sense. You have to realize, citations on Wikipedia exist solely so people can look at the evidence of a thing we are saying. If the citation doesn't even mention the article's topic, then it's not relevant to the article. We can't handwave that away and say "trust me, this is relevant" to our readers.

The fact that the science hasn't caught up yet doesn't absolve us of that requirement. We wait until the relevant science documents our article subject, then cite it. — The Hand That Feeds You:^Bite 13:07, 7 May 2023 (UTC)

In this case long covid is explicitely mentioned. And the article is already cited here. https://www.nature.com/articles/s41579-022-00846-2

This seems highly relevant. Can we include this information? It discusses the link between long covid and neurodegeneration. Amyloidosis (apart from the microclots) should be included in possible causes.

"Possible mechanisms for these neuropathologies include neuroinflammation, damage to blood vessels by coagulopathy and endothelial dysfunction, and injury to neurons32. Studies have found Alzheimer disease-like signalling in patients with long COVID78, peptides that self-assemble into amyloid clumps which are toxic to neurons79, widespread neuroinflammation80, brain and brainstem hypometabolism correlated with specific symptoms81,82" MagicTheater (talk) 21:44, 6 May 2023 (UTC)

That nature review is a great source, thanks for sharing. Do you have specific text you'd like to propose? —Femke 🐦 (talk) 07:54, 7 May 2023 (UTC)

Yes. I have a proposed change under the heading "Causes" and in the section following: "Other situations that might cause new and ongoing symptoms to include:"

Proposed Change:

Neuroinflammation, and potentially neurodegeneration, caused by the aggregation of amyloid peptides within neurons. (from https://www.nature.com/articles/s41579-022-00846-2, already cited in article)

Context for change, not necessary to include at this point:

The process is known as amyloidosis. It can be precipitated by infection and then persist independently. Many amyloids can self-propagate within the human body and are also subject to what's called the "misfolded protein response". In some cases, this can result in a sustained pathology with neurological symptoms (autonomic dysfunction, sensory and cognitive deficits) that fluctuate over time.

There are a number of primary sources in the literature that discuss this phenomena in relation to COVID-19, though I realize these cannot be cited on Wikipedia. It may be beneficial for the editors to put this into context. So I've included a number of these primary sources below.

A case series of cutaneous phosphorylated α-synuclein in Long-COVID POTS

https://link.springer.com/article/10.1007/s10286-022-00867-0

"We report the first cases, to our knowledge, of pathological cutaneous p-syn in patients with post-viral autonomic dysfunction after SARS-CoV-2 infection. All of our patients developed POTS after mild-to-moderate COVID-19; however, none of them reported prodromal symptoms of α-synucleinopathy prior to their diagnosis of COVID-19. Therefore, the association of p-syn in these five young adults, while intriguing, is of uncertain significance...As cutaneous p-syn has demonstrated itself as a highly sensitive and specific marker of the α-synucleinopathies [8], our patients’ results are unlikely to be false positives. Without a comparative biopsy prior to SARS-CoV-2 infection, it is unclear if the presence of p-syn is an incidental and unrelated finding, if the infection triggered accelerated aggregation of p-syn, or if the presence of p-syn predated the infection and predisposed our patients to the development of Long-COVID and/or POTS."

Microgliosis and neuronal proteinopathy in brain persist beyond viral clearance in SARS-CoV-2 hamster model

https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(22)00252-3/fulltext

"Regardless of whether neuroinvasion was really absent or merely undetectable, the fact that SARS-CoV-2 infection triggered neuroinflammation in the olfactory bulb and increased hyperphosphorylated Tau and alpha-synuclein levels in the suprahippocampal cortex, distant from the site of viral administration, and that these changes persisted beyond the infection period, is interesting. These results are reminiscent of those from an almost concurrent study in rhesus and cynomolgus macaques, demonstrating the persistence of microgliosis and alpha-synuclein aggregation several weeks after SARS-CoV-2 infection.7 The link between viral infections, inflammation and the risk of developing neurodegenerative disorders has been postulated for decades, and has been a major concern since the beginning of the pandemic,8 and indeed, findings from both living COVID-19 patients and post mortem tissues confirm the presence of changes mimicking an acceleration of neurodegenerative processes that usually take years to manifest."

Detection of SARS-CoV-2 viral proteins and genomic sequences in human brainstem nuclei

https://www.nature.com/articles/s41531-023-00467-3

"Together, the detection of viral proteins in the substantia nigra and the vagal nuclei support the notion that viral infections, such as SARS-CoV-2, may predispose, or quickly precipitate, the development of neurodegenerative diseases, especially Parkinson’s Disease"

Neurotoxic amyloidogenic peptides in the proteome of SARS-COV2: potential implications for neurological symptoms in COVID-19

https://www.nature.com/articles/s41467-022-30932-1

"Therefore, amyloid-forming proteins from the SARS-CoV-2 virus in the CNS of COVID-19 infected patients could have similar cytotoxic and inflammatory functions to amyloid assemblies that are the molecular hallmarks of amyloid-related neurodegenerative diseases such as AD (Aβ, Tau) and Parkinson’s (α-synuclein). The worst-case scenario given the present observations is that of the progressive neurological amyloid disease being triggered by COVID-19."

Amyloidogenic proteins in the SARS-CoV and SARS-CoV-2 proteomes

https://www.nature.com/articles/s41467-023-36234-4

"In view of these reports, to further increase our understanding of the possible amyloid nature of SARS proteins, we studied the complete proteomes of SARS-CoV and SARS-CoV-2. The focus of our study was to investigate the intrinsic propensity of all types of SARS proteins (structural, accessory, and non-structural) to form amyloid aggregates under near-physiological in vitro conditions. Our results prompt further investigations of the possible role of the aggregation of viral proteins in the range of pathologies induced by SARS-CoV-2."

Happy to provide additional references upon request. MagicTheater (talk) 13:50, 7 May 2023 (UTC)

I suggest finding an alternative source for "inhibited oxygen exchange as a result of persistent circulating blood plasma microclots;"

Pretorius E, Vlok M, Venter C, Bezuidenhout JA, Laubscher GJ, Steenkamp J, Kell DB (August 2021). "Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin". Cardiovascular Diabetology. 20 (1): 172. doi:10.1186/s12933-021-01359-7. PMC 8381139. PMID 34425843.

Pretorius et al. have been the most vocal proponents of this theory and in fact, they were the ones who proposed it.

https://portlandpress.com/biochemj/article/479/4/537/230829/A-central-role-for-amyloid-fibrin-microclots-in

This violates WP:CRYSTAL. It is speculative and refers to a biased source. It is at least worth providing a disclaimer, so readers are aware this. MagicTheater (talk) 13:57, 7 May 2023 (UTC)

Similarities to other syndromes

Choutka, J., Jansari, V., Hornig, M. et al. Unexplained post-acute infection syndromes. Nat Med 28, 911–923 (2022). https://www.nature.com/articles/s41591-022-01810-6

Context to aid understanding:

"The observation of unexplained chronic sequelae after SARS-CoV-2 — known as post-acute sequelae of SARS-CoV-2 infection (PASC), or ‘long COVID’ — in a subset of individuals has focused attention on this previously overlooked phenomenon, bringing an opportunity for accelerated progress in biomedical research into PAISs."

"It is remarkable that PASC, especially when it occurs after mild or moderate (rather than severe) COVID-19, shares many similarities with chronic illnesses triggered by other pathogenic organisms, many of which have not been sufficiently explained. These PAISs are characterized by a set of core symptoms centering on exertion intolerance, disproportionate levels of fatigue, neurocognitive and sensory impairment, flu-like symptoms, unrefreshing sleep, myalgia/arthralgia, and a plethora of nonspecific symptoms that are often present but variably pronounced. These similarities suggest a unifying pathophysiology that needs to be elucidated to properly understand and manage post-infectious chronic disability."

This review covers a more comprehensive breadth of post-acute infection syndromes including those associated with SARS-CoV-2 (e.g. long COVID), Ebola, Dengue, Polio, SARS-CoV-1, Chikungunya, Epstein Barr (mononucleosis), West Nile, Ross River virus, Coxsackie B, H1N1 influenza, Varicella Zoster (chickenpox, shingles), Coxiella Burnetii (Q fever), Borrelia (Lyme disease, tick borne relapsing fever) and Giardia. The Wikipedia article needs to discuss long COVID from a broader perspective.

" In fact, several studies identified the association of this outbreak of giardiasis with chronic fatigue42, irritable bowel syndrome (IBS)43, and fibromyalgia44 persisting for many years."

"Several epidemiological studies using health-registry data have looked for post-infection registration of a diagnosis of ME/CFS as a surrogate for chronic post-infection sequelae. One study found that infection with the pandemic H1N1/09 influenza A virus (but not receipt of vaccine) was associated with a more than twofold increase in ME/CFS diagnosis in a Norwegian health registry57. Similarly, another longitudinal registry study identified an association between varicella zoster virus (VZV) infection and an increased risk of an ME/CFS diagnosis58, supporting the concept that the correlation between exposure to certain infections and development of chronic sequelae is indeed not uncommon."

"The prime manifestations include an overall poor functional status, exertion intolerance, debilitating fatigue, and unrefreshing sleep. Other characteristic features include neurocognitive and sensory impairments, dysautonomia, musculoskeletal complaints, flu-like symptoms, and other feelings of illness. Irritability, mood swings, and signs of depression, as well as a wide range of other nonspecific neurological and immunological symptoms (Box 2), are frequently present."

"...long-term data from studies of [post treatment Lyme disease syndrome] show ongoing disability even after many years. A study that examined a cohort of 128 individuals after culture-confirmed Lyme disease reported that 4.7% had PTLDS at clinical examination 11–20 years after contracting erythema migrans (a typical circular rash occurring at the site of the tick bite)83. Remarkably, a case–control study of 61 cases and 26 controls found the symptoms of PTLDS to be associated with physician- or laboratory-confirmed Lyme disease for up to 27 years50. It was also reported that post-Borrelia symptoms mimicking fibromyalgia, such as musculoskeletal pain, tender points, dysesthesias, memory difficulties, and debilitating fatigue persisted in some individuals for at least 10 years84. MagicTheater (talk) 15:12, 7 May 2023 (UTC)

Creation of a "Pathology" Section

The Wikipedia article could use a pathology section to outline the current state of knowledge. Perhaps, some of the editors can help me put this together. Here's a Nature review from 2022 to start from.

Mehandru, S., Merad, M. Pathological sequelae of long-haul COVID. Nat Immunol 23, 194–202 (2022). https://www.nature.com/articles/s41590-021-01104-y

Summary of Article:

As of November 2021, there have been 254 million cases and 5.1 million deaths due to COVID-19. Many people who recover from the virus experience ongoing symptoms, known as "long COVID" or "post-COVID syndrome." The duration of these symptoms can vary, lasting from over 4 weeks to more than 3 months after the initial infection.

Long COVID can affect several organ systems and may cause a range of issues, including fatigue, sleep problems, memory issues, mood impairment, heart issues, and breathing difficulties. These symptoms can be experienced by people who had mild, moderate, or severe COVID-19. While lung issues are common in severe cases, those with long COVID can experience a variety of other symptoms.

Neurological and psychiatric problems can occur in long COVID, with common issues including chronic fatigue, sleep abnormalities, and headaches. Some patients may also develop cognitive issues, such as "brain fog" or even neurological disorders like Parkinson's disease. Additionally, psychiatric disorders like depression, anxiety, and post-traumatic stress disorder may arise.

Patients with long COVID may experience heart-related symptoms, such as chest pain or palpitations. Some may have ongoing inflammation or other cardiac abnormalities. Thrombotic complications, such as blood clotting, can occur during acute COVID-19 but seem less common in the post-acute phase.

Gastrointestinal symptoms, such as diarrhea, nausea, and abdominal pain, are common during acute COVID-19 and may persist in long COVID. Some patients may also develop new or worsened irritable bowel syndrome. Additionally, COVID-19 has been associated with the development of new-onset diabetes in some cases.

Other health issues related to long COVID can include kidney injury, skin rashes, and hair loss. While kidney injury in severe cases may be associated with high mortality, some patients show significant recovery. Skin rashes can occur in various forms during acute COVID-19, and a small number of patients may experience a rash during long COVID. Hair loss is also a common issue, but it typically resolves on its own.

More detail on what is known about the pathology:

In mild COVID-19 cases, a strong initial immune response leads to viral neutralization and disease resolution. However, in severe cases, uncontrolled SARS-CoV replication evades the host's immune system, resulting in increased inflammation and lung tissue damage. The link between acute COVID-19 and post-COVID-19 syndrome remains unclear, but various hypotheses exist. Factors such as persistent inflammation, immune cell activation, and cytokine elevation may contribute to lingering symptoms. Additionally, prothrombotic states and autoimmune responses can play a role in post-COVID syndrome.

A recent study found that long-haul COVID patients had persistent increases in certain immune cells and elevated interferon levels, suggesting delayed inflammation resolution. Damage to lung tissue and impaired regeneration, along with fibrotic states, may contribute to persistent lung injuries. The prothrombotic state in acute COVID-19 can also result in various organ injuries.

Persistent elevation of proinflammatory cytokines may have multiple systemic and organ-specific effects. Furthermore, recent studies have reported persistent immunological abnormalities, immune dysregulation, and autoimmune responses in COVID-19 patients. The possibility of a viral reservoir and antigen persistence in tissues such as the intestine has also been suggested.

Overall, the pathophysiology of post-COVID syndrome is complex and multifaceted, involving a range of immune and inflammatory responses, organ-specific effects, and potential viral persistence. This article highlights the need for a comprehensive and unbiased profiling of the immune system in patients with post-COVID syndrome to better understand the pathophysiological mechanisms underlying the condition. It suggests utilizing various techniques such as measuring systemic and local secreted inflammatory proteins, single-cell RNA profiling of immune cells, ex vivo imaging of diseased organs, multiplex imaging, and spatial transcriptomics analysis of tissue biopsies. Comparing these results with age- and comorbidities-matched healthy individuals and other control cohorts can help identify potential autoimmune contributions to the syndrome.

The article also discusses the importance of establishing canonical disease definitions based on objective clinical and laboratory criteria due to the heterogeneity of post-COVID syndrome manifestations. It emphasizes the need for rigorous, high-dimensional, and serial profiling of tissues and peripheral blood to better understand the multiple syndromes currently encapsulated under the term "post-COVID-19 syndrome."

Finally, the article mentions the National Institutes of Health's PASC initiative launched in February 2021, which aims to study the prevention and treatment of long-term effects of SARS-CoV-2 infection. This initiative will collect data from diverse patient cohorts, including children and adults, to ensure the findings apply to communities most affected by COVID-19. The use of cutting-edge technologies will be crucial in deciphering the molecular heterogeneity of post-COVID syndrome and identifying precise, druggable targets tailored to these defects. MagicTheater (talk) 15:31, 7 May 2023 (UTC)

Okay, stop. This is getting WP:BLUDGEON-y.

You need to provide a specific, concise suggestion for what you want to add, not just posting huge quotes out of papers and insisting we figure out WTF you want done. — The Hand That Feeds You:^Bite 16:59, 7 May 2023 (UTC)

Actually, is all the above directly from the article? That would be a WP:COPYVIO, which is a whole 'nother huge problem. — The Hand That Feeds You:^Bite 17:01, 7 May 2023 (UTC)

"Inflammation in the epipharynx, as a cause possibility"

"Long COVID is considered to be caused by the persistence of chronic inflammation after acute COVID-19 infection. We found that all long COVID patients had residual inflammation in the epipharynx, an important site of coronavirus replication, and some long COVID symptoms are similar to those associated with chronic epipharyngitis. Epipharyngeal abrasive therapy (EAT) is a treatment for chronic epipharyngitis in Japan that involves applying zinc chloride as an anti-inflammatory agent to the epipharyngeal mucosa. In this study, we evaluated the efficacy of EAT for the treatment of long COVID. The subjects in this study were 58 patients with long COVID who were treated with EAT in the outpatient department once a week for one month (mean age = 38.4 ± 12.9 years). The intensities of fatigue, headache, and attention disorder, which are reported as frequent symptoms of long COVID, were assessed before and after EAT using the visual analog scale (VAS). EAT reduced inflammation in the epipharynx and significantly improved the intensity of fatigue, headache, and attention disorder, which may be related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These results suggest that EAT has potential as a novel method for long COVID treatment." See Abstract.--98.113.209.140 (talk) 02:54, 26 May 2023 (UTC)

Reformat; this is primary research - just an early-stage study on 58 people - and was published in a low-quality MDPI journal suspected of predatory publishing; see WP:CITEWATCH. Certainly not evidence of a cause. Unusable. Zefr (talk) 04:52, 26 May 2023 (UTC)

@Zefr:, actually the art. was not on preliminary research, but the tip of the iceberg of years long Japanese med. practice covered by Japanese insurance and presented in detail by NHK video w/ a transcript. The referenced art. was a reprint on the Web page of NHK - the most prestigious U.S. med. agency. So, a reprint of an art. there is neither predatory nor a primary source. I do not know where you got those inaccuracies from. Additionally, we have the video as the 2nd secondary source from the Japanese NHK agency, which is as solid as American NIH. The topic is extremely important and not covered by English language media much. So 2 secondary sources should be enough, as per WP policy. Right?--98.113.209.140 (talk) 03:51, 27 May 2023 (UTC)

This is the article which was offered as the source, showing a study of 58 people and publication in Viruses - an MDPI journal which is potentilly predatory (authors may have paid for publication; editorial review may have been absent or substandard). MDPI publications are untrustworthy, and should be replaced with a WP:MEDRS review, if available. As epipharyngeal abrasive therapy (EAT) is in the early stage of research and is not adopted widely, it is just primary research at this stage.

The use of EAT to treat Long COVID seems poorly developed as a concept and a potential long-term therapy, and is not supported by a MEDRS review. EAT is conjecture at best, is off-topic for addressing the varied symptoms of Long COVID, and does not have review literature to justify including this source in the article. I'll have no further comments on this topic. Zefr (talk) 14:59, 27 May 2023 (UTC)

As Zefr explained, this is a very preliminary study. As an encyclopedia, our job is primarily to report what's currently known as opposed to speculated. The Quirky Kitty (talk) 17:06, 4 June 2023 (UTC)

@The Quirky Kitty:, it is not preliminary for infrequent studies. "Preliminary" is relative to frequency of studies. If you have 1 study every 5 years, then the 1st study is it, as you will not have anything more soon. That is the case. Or that or nothing and something is better than nothing even for WP.--98.113.209.140 (talk) 19:17, 9 June 2023 (UTC)

Proposed edit to Prevention section:

A 2023 study found that metformin prevents long COVID, according to a new study in The Lancet Infectious Diseases.

BuffaloDoc (talk) 16:50, 17 June 2023 (UTC)

References

Answered directly above. Zefr (talk) 17:50, 17 June 2023 (UTC)

About large-scale trials and MEDRS

@Zefr. I'm new to medical editing, so I'm probably reading MEDRS wrongly. My reading of WP:MEDREV is that when there are large-scale clinical trials with results not yet presented in secondary sourcing, it is okay to mention them in the text (I had removed it from the lead before). When a new review is out, this should either replace it or if it's not mentioned, taken as a sign it wasn't important enough. Also happy to wait a few months, as proper reviews of long COVID are published quite a bit. —Femke 🐦 (talk) 16:22, 16 June 2023 (UTC)

Referring to this report, the apparent effect of metformin remains too preliminary to include in the article, and is unconfirmed by larger studies or a WP:MEDRS review. As stated in the conclusion, "all therapeutics require further prospective, interventional trials to assess long COVID incidence", indicating we should wait for stronger sources. Long COVID is in early-stage research, and will require years to clarify its mechanisms and treatment. Zefr (talk) 17:29, 16 June 2023 (UTC)

I certainly understand the hesitation to mention this research at this point in time.

There are reviews of the findings, however, which believe the study is important enough to suggest that off-label prescribing may be justified in current medical practice. "Now, more than 2 years after the outpatients trial began, metformin is the only medical intervention in the study shown to prevent long COVID. The reduction in risk may warrant clinicians using the drug in patients sooner rather than later."

https://www.cidrap.umn.edu/covid-19/common-diabetes-drug-shown-prevent-long-covid BuffaloDoc (talk) 18:24, 17 June 2023 (UTC)

That seems a careless statement by U of Minn, as "prevention" certainly has not been confirmed or approved as a use by the FDA or recommended in a national clinical guideline. See WP:MEDASSESS, left pyramid. The Lancet study is primary research. Zefr (talk) 18:30, 17 June 2023 (UTC)

We don't disagree on whether the Lancet study is primary research. I think in a topic such as this, reviews become out of date fast, and to maintain up-to-date information it is okay to lean on the highest-quality primary sourcing, where they advance on the systemic literature. That bar to include primary studies should be very high of course, with many 1 or 2 qualifying in a year, to be replaced within a year by reviews. To me, an N=1431 RCT study meets that bar, but I'm sure you've got a better handle on that. WP:MEDASSESS is a pyramid of reliability, with prospective large-scale randomised trials at the top of the primary sources ladder. In the absence of reviews (given the 6-8 month lag between primary research publication and reviews), there is a trade-off to be made.

Would you agree with the premise that high-quality primary sources can be used sparingly per WP:MEDREV in the time between publication and publication of secondary sourcing? And what size study (given a set effect size) would you deem meets that bar?

One common reason to be hesitant with including a primary source is that no responses from the wider scientific community has been published. I note that there is already some response published: A separate comment in the Lancet describes this study as "the first high-quality evidence from a randomised controlled trial to show that the incidence of long COVID can be reduced by a medical intervention". —Femke 🐦 (talk) 14:35, 18 June 2023 (UTC)

Health system responses

The section is very news-like. I would like to remove it almost completely and write a small section on history based on secondary sourcing. As it's a large part of the article, I'll wait for feedback here first. —Femke 🐦 (talk) 16:16, 7 August 2023 (UTC)

Agree a revision is in order - that section is based mainly on 2020-22 news and is all history now. In 2023, the system response in several countries has transitioned to clinics, online resources, and clinical or patient guidelines for long COVID, although there is little in the academic literature to date. Zefr (talk) 17:14, 7 August 2023 (UTC)

Is CDC a MEDRS source

Or should I try to supplement it with reviews whenever it's cited? —Femke 🐦 (talk) 15:11, 6 August 2023 (UTC)

They're absolutely a reliable medical source. Materials published by a major public health agency would be close to the top of the medical evidence pyramid, similar to clinical practice guidelines, as they reflect the synthesis of research. The Quirky Kitty (talk) 15:35, 6 August 2023 (UTC)

Thanks :). In climate, I've noticed that NASA's public-facing website doesn't always enjoy the same scrutiny / has the same precision as their normal scientific output. That's why I wasn't quite sure how to judge https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html. —Femke 🐦 (talk) 16:06, 6 August 2023 (UTC)

My issue with this would be more to do with the fact that it is aimed at patients / the public rather than an academic community - and so gets into the "simplify for compliance" game. . Are you sure we wouldn't prefer to use something like this instead: https://www.mdpi.com/2076-0817/11/2/269 (WP:BESTSOURCE) Talpedia 17:18, 6 August 2023 (UTC)

We absolutely do not use MDPI publications for medical content. They are a predatory publisher with substantial prior evidence of recruiting authors to pay for publication and do not provide dependable rigorous editorial review (sometimes, none). MDPI is the #1 publisher to avoid on WP:CITEWATCH.

The US CDC is at the top of the evidence pyramid for quality and trust - see WP:MEDORG and WP:MEDASSESS. Zefr (talk) 17:37, 6 August 2023 (UTC)

(Edit conflict) An MPDI journal doesn't give me any confidence. Often, their peer review is very shallow. A colleague of mine recently had an 8-day turnover in one of their journals. We've got plenty of more recent reviews in top journals (Altmann and Davis). My question is whether I'll need to supplement all CDC statements before nominating for GA. (I know there are still quite a few other things to do before that). I'm reassured now it's fine not to do that. —Femke 🐦 (talk) 17:39, 6 August 2023 (UTC)

Fine, it seems that that publisher is somewhat controversial. What if we could find a similar systematic review in a non-objectionable journal? Talpedia 21:59, 7 August 2023 (UTC)

I'm not sure I have formed opinions on the use of such sources when a more recent academic-targetted WP:MEDRS sources does not exist, other that to note that I can think of an example were we were using BMJ editorials for similar purposes early on in the pandemic. I'd throw out this as potentially relevant to our considerations. Wikipedia's coverage of covid was commended for its conservatism. There's a risk that quoting from things targetted at a general audience could pull us into making assertions before the facts are known (which is supposedly what was good about wikipedia during the pandemic) because i) bodies may be compelled to provide answers to the general public, particular to "fill knowledge gaps" - an argument of the fact checking community and ii) people are more aware of factual rigour in academic settings. Talpedia 08:48, 8 August 2023 (UTC)

MDPI is a mixed bag, but this particular journal appears to be above average: https://www.scopus.com/sourceid/21100337905 It appears to be indexed by some but not others, which suggests a middle-of-the-road situation.

Wikipedia:WikiProject Academic Journals/Journals cited by Wikipedia/Questionable1 says "MDPI is very much hit-and-miss. MDPI on Beall's original list in 2014, but was removed in 2015. The updated list says "Some of their journals have a very poor peer-review; some are fine." Social Sciences could be multiple other journals. Evaluate on a case by case basis (see Q8 in the FAQ)."

I generally find that this represents the overall community opinion pretty well. MDPI gets used in Featured Articles for diseases; if there were anything like a ban, that wouldn't be happening. The only thing I could quibble with in that description is the punctuation for what should be hyphenated as "case-by-case basis" (@Headbomb). WhatamIdoing (talk) 21:51, 6 August 2023 (UTC)

That's a fairly old description of the situation, and more evidence against MDPI came to light since. It's still a case-by-case thing, but here this has been published in a special issue (see MDPI#Proliferation of special issues), and MDPI have (probably) used those to dodge their shitty regular review process. Whether or not they're predatory will vary with the assesser, but they're at the very least predatory-ish, and I would never use an MDPI review to back up anything more than basic shit, like "water is a chemical compound with formula H₂O". They're definitely not WP:MEDRS to me. Hell, I personally wouldn't even trust them to say it's possible to drown in water. But that's just me. Headbomb {t · c · p · b} 22:05, 6 August 2023 (UTC)

I also want to warn against Zefr's (yet another) misrepresentation of what the WP:CITEWATCH says. MDPI is the #1 publisher to avoid on WP:CITEWATCH" is misleading at best. It's not the #1 publisher to avoid, it's the most cited publisher that publishes questionable shit. There are way worse publishers than MDPI out there. "Because it's on the Citewatch" should never be an argument. "See the note on the Citewatch entry" might be one. Headbomb {t · c · p · b} 22:09, 6 August 2023 (UTC)

Is long COVID a diagnosis by exclusion?

I think one of the highest-quality sources we have is: the 2022 guideline for primary care published in BMJ. That paper says under the heading "What can my primary care team do for me", Making the diagnosis of long covid (which does not have to be by exclusion) and excluding alternative diagnoses.

This seems to contradict the older source we now cite in the lead (The Journal for Nurse Practitioners paper). Neither source gives a lot of information.

I don't understand the 2021 NICE clinical guidelines completely: The panel acknowledged that this case definition may be interpreted as a diagnosis of exclusion. However, they discussed that ongoing symptomatic COVID-19 and post-COVID-19 syndrome have many features in common with other conditions, some of which could be considered life threatening. Therefore, ongoing symptomatic COVID-19 and post-COVID-19 syndrome should not be the first conditions to be excluded for reasons of patient safety.

I think they try to say you should exclude a couple of other life-threatening conditions first, before you diagnose people with long COVID if they have the symptoms + history that makes sense.. But I'm not sure if their conclusion is that long COVID is a diagnosis of exclusion, or something "in the middle" if that exists.

Any page watchers understand this better? —Femke 🐦 (talk) 18:28, 2 August 2023 (UTC)

The Davis review, ref #1 gives a broad view of the complexity of pathologies involved, and of the absence of knowing specific mechanisms. To diagnose, a clinician connects a pathology to a mechanism, which long COVID frustrates by its diversity of systems affected.

We are only in the early phases of clinical research on long COVID, which will require years or decades to reach clarity for the pathology-mechanism relationship on so many disorders. In the meantime, as the Davis review discusses in the section Widespread lack of postviral knowledge and misinformation, long COVID research tends "to document only the risk factors for severe acute COVID-19, which are different from the risk factors for conditions that overlap with long COVID."

Excluding individual definable pathologies one-by-one would be the only option clinicians currently have, and likely makes declaring a long COVID diagnosis an uncertain conclusion. Zefr (talk) 20:46, 2 August 2023 (UTC)

I'm still wondering why the BMJ guideline says it's not necessarily a diagnosis by exclusion. I suppose if you have somebody with quite specific long COVID symptoms (PEM, loss of smell) vs more common symptoms (fatigue, headache), a GP would be more comfortable diagnosing long COVID without excluding too many other things. Their first guess would be long COVID, and you exclude alternative diagnoses only for excluding life-threanening stuff or easily treatable stuff.

Is the term "diagnosis of exclusion" a contested way of looking at it? This Rheumatology paper argues against having diagnoses of exclusion at all (a balance of probabilities is the better way of diagnosing, they argue). Not familiar with this area, but the way NICE phrases it, it seems like they don't want to make it out to be a diagnosis of exclusion.

Maybe the phrasing can be changed to something along the lines of "A diagnosis of long COVID is made based on history (or symptoms and a history of COVID infection) and by excluding other diagnoses". That's closer to what I see in quite a few papers. —Femke 🐦 (talk) 18:42, 4 August 2023 (UTC)

I've continued my search for how sources describe this, including by reading the 2015 IOM report on ME/CFS, which is likely the closest to long COVID. That report indicates that ME/CFS should not be a diagnosis of exclusion, given that it brings unnecessary delays in starting symptoms treatment/management. As such, I believe we need a stronger source that a single 2021 review in a low-impact journal. (I'm tentatively choosing a MEDDATE of 18 months to assess source quality, given the novelty of long COVID).

A more standard process of differential diagnosis seems more in line with how sources describe the diagnostic process of long COVID. this paper states that diagnosis is based on inclusion and exclusion criteria, not mainly the latter. As such, I'm going to remove this statement from the lead, and put in something more in line with NICE or BMJ. —Femke 🐦 (talk) 16:23, 10 August 2023 (UTC)