Long Covid in the media and social media 2023

I am not sure the text of the article says what the title suggests.

The title says “75 per cent of COVID ‘long haulers’ free of symptoms in 12 months: McMaster study” but the body of the article says “A McMaster University study on long COVID suggests that while most infected people are free of symptoms within 12 months, about 25 per cent continue to experience lingering effects such as coughing, fatigue and breathlessness.”.

The first implies that 75% of ‘long haulers’ fully recover, whereas the latter says that 75% of those infected with Covid-19 fully recover which are not the same patient populations. The same confusion appears the McMaster University website (see https://brighterworld.mcmaster.ca/articles/most-long-covid-patients-recover-within-year-says-study/ ) which switches the majority of those infected with the term the majority of long haulers. On the basis of this study 25% of those infected with Covid-19 still have health issues after one year, which given the numbers of those infected in the first place is still a large number of people.

The actual study reported in the European Respiratory Journal (see https://erj.ersjournals.com/content/early/2022/08/04/13993003.00970-2022 ) only reports people investigated at intervals up to 12 months so tells us nothing about the fate of long haulers.

 

Leaving aside the ridiculous re-framing and basic report mangling,

Hopium.

 

It's actually impressive propaganda, to frame the fact that 1/4 of patients still have significant symptoms after a year as "good news" when the starting point was always that this would never happen. Goebbels would be proud, and kind of jealous that people just eat this stuff out that easily without any sort of enforcement.

And "have faith". Holy crap we are in the absolute worst possible hands, the entire profession has lost contact with reality. This is really looking out as the kind of civilization-ending ineptitude if things don't get back on track. Imagine these fools in charge of a killer pandemic, they will fuck up every damn thing they put their hands on.

One interesting thing: an article on this "study" was published to the coronavirus subreddit and most of the comments point out the many critical flaws and aren't buying it, picking apart the misleading language. If medicine continues with this crap, they will literally lose too much credibility to repair. I'm at the point where I simply don't trust anything from this profession, they lie way too much.

 

So we're just gonna give up. Nice job.

 

They finally corrected it by editing the title. Now it says:

25 per cent of COVID patients become ‘long haulers’ after 12 months: Mac study

Which is broadly in line with other studies.

 

My letter in tomorrow’s guardian: https://www.theguardian.com/society/2023/jan/05/the-struggle-to-live-a-normal-life-with-long-covid

“In order for progress to be made with long Covid, doctors and leaders must acknowledge and learn from the mistakes that have been made with ME/CFS, including the decades of underinvestment in high-quality biomedical research and overinvestment in low-quality psychosocial research.”

I’ve had several letters on ME/CFS published in other paper and journals but I’ve never had one in the guardian, despite several attempts over the years. I hope this is a sign that the times may be a changin’.

 

Great letter @Robert 1973

 

Doesn't count as giving up when you don't even try.

They ran out the clock, as it turns out the public is tolerant of a large number of death and disability all around them as long as what's happening is just ambiguous enough. This is actually terrifying about what it says for the future, we are still in a everyone-for-themselves state of development.

There is a % of the population below which anything happening can be tolerated, especially with the industry tasked with it is engaged in massive cover-up and generally sees nothing wrong with that. The threshold for mass political movement is usually around 3%, but that doesn't work out with sick people, it's the level at which people start mobilizing and build up.

We can never build up, and whatever we build during the day can be destroyed in a minute in secret behind closed doors, without any effort.

 

George Garton interview: ‘Doctors said I had long Covid – it was a blood clot’
Exclusive: England hopeful nearly quit over misdiagnosed illness before chance meeting at a party led to full recovery

In the space of six dizzying months in 2022, George Garton went from realising his childhood cricketing dream to the nightmare of seriously contemplating retirement at the age of 25.

The rollercoaster has thankfully since taken another upward turn and, after a summer spent trying to play through what is now believed to have been an undiagnosed blood clot on his lung, the Sussex all-rounder is back and will next up this week with the Joburg Super Kings in the newly formed SA20 franchise in South Africa.

“I feel great - 100 per cent,” says Garton, who credits a chance meeting at his grandmother's 90th birthday party with Dr Rob Galloway, a clinical professor in emergency medicine at the Royal Sussex Hospital, for setting him on the road to recovery.

https://www.telegraph.co.uk/cricket...rton-interview-said-had-long-covid-got-wrong/

It would appear the symptoms of long COVID can be mimicked by a blood clot in the lung or is this more evidence of a possible link between blood clots and long COVID

 

Another Long Covid misdiagnosis. A young woman died from cancer that was misdiagnosed as Long Covid over some six months. This was in the second half of 2020, but the mother recently has started a petition on improving cancer awareness and resources, see https://www.change.org/p/stevebarclay-improve-the-awareness-and-diagnosis-of-cancer-in-young-adults

There is not enough information in the petition background blurb to say if this relates to the medical profession failing to take conditions like Long Covid seriously or if it was doctors failing to adequately test once they have dismissed the patient as having one of the various poorly understood conditions such as ME or FND. We do need meaningful recording of misdiagnoses of such conditions resulting in harm or even potentially preventable deaths.

This type of situation may become more frequent give the UK NHS are putting any additional spending on services for Long Covid on hold.

 

This is not so much long covid in social media but an academic webinar at Oxford on 23 Jan. It promises "leading experts."

https://www.bigmarker.com/oup-academic-marketing/Long-Covid-An-Oxford-Open-Conversation-with-Leading-Experts?utm_campaign=oupac-campaign:1542172222884997044&utm_source=Twitter&utm_medium=social&utm_content=post:1572219918753034815&utm_term=OUP Medicine


eta: registration details provided at link

 

https://twitter.com/user/status/1610747156779962372

 

Speaking generally, I think it's possible for an LC diagnosis to be quite correct (with the clinical tools we currently have) and that a patient might also develop something like metastatic adenocarcinoma with unknown primary. It's also possible the two conditions could be linked, with an immune dysregulation adding a predisposing factor to cancer development and/or rapid progression.

 

Merged thread

LC/ME Discussed on Jon Stewart

On yesterday's episode of 'The Problem With Jon Stewart' Podcast. the plight of LC/ME + need from Congress support/funding discussed. Sharing a thread of the highlights from the episode as that's a pretty huge platform.

https://twitter.com/user/status/1613717068733456385



Direct link of the start of the segment:

 

Emma har varit sjuk i tusen dagar
https://www.aftonbladet.se/nyheter/a/eJzAGy/langtidscovid-emma-33-har-varit-sjuk-i-1000-dagar

Google Translate, English ("Emma has been sick for a thousand days")

Well worth a read!

 

When the history of Long Covid gets written, it will essentially be a long list of very specific warnings and recommendations being ignored, then when those warnings came to be, the default reaction is cover-up and paralysis. The warnings were very specific, but they don't matter because they aren't even acknowledged. The first step to solving a problem is to acknowledge it. We aren't even at step 1 yet.

This is by a very wide margin the worst failure of expertise in human history, since usually failures of expertise are when experts are nearly unanimously right, warn well in advance, and it's non-experts who simply don't pay attention. This is a unique case where the entire profession is itself the problem, with a tiny few exceptions like this.

Meanwhile, the entire profession is paralyzed waiting for the pathophysiology, since medicine is built around pathophysiology or bust. And they refuse, this is how an entire profession can get to be the problem itself, not just part of the problem, but the only relevant part of the problem.

(Quoted tweets in reply to this tweet, unchained so putting parent tweet)
https://twitter.com/user/status/1614371120148275201

 

Interview on Irish national radio yesterday

https://www.newstalk.com/podcasts/highlights-from-the-pat-kenny-show/long-covid-study-findings

 

https://twitter.com/user/status/1614661805074448385

 

https://twitter.com/user/status/1614479292565716993