Long Covid in the media and social media 2022

https://twitter.com/user/status/1592882873484603395

 

This is the right framing. Very rare. They are impacts. It's very sad that we can never talk or do something about those impacts because they are systematically reattributed as the cause.

In their most formal definition, of which the vast majority of "cases" don't meet, anxiety and depression are symptoms, and most "anxiety" has nothing at all to do with worries or thoughts and beliefs. They are not conditions. They do not cause health issues, they result from them. And for the most part are even more heterogeneous labels than all the chronic illnesses, no surprise as they are fully generic hand-waving that makes astrology almost precise, though just as scientific.

It will genuinely be one of the single most beneficial things the medical profession will have done when they move from a cause model of mental health to one of outcome, but I don't know how many decades it will take them to get there. Mental healthcare is generally as lousy as medicine was in the late 19th century, it's so fully screwed up there's almost nothing to do with the current models, they have to be scratched entirely before anything good comes out of there.

 

It's interesting that Indeed, a company with nothing to do with healthcare, seems concerned about the impact of long Covid. It's now recognized as a big enough health problem (in some circles) that we're not just analyzing the illness, we're analyzing the effects on broader society.

 

Its kind of horrifying watching medicine deny the condition, stats organisations track it as it rips through the populace and financial organisations being the only thing showing any concern. Its a really weird response to 3.5 - 7% of the population gaining a new disability. The lack of response from medicine isn't a surprise I think to ME patients as we have watched Psychology rot them from the inside but the government suppression of the news of it is just weird. I can see it from the UK and the USA, both countries with high amounts of very right wing propaganda driven societies but the Psychological capture of medicine has meant most of the west is completely ignoring it. South Africa and Israeli seem to be the only countries acknowledging it exists and doing treatment trials, otherwise its individual clinics in countries doing so without much in the way of funding. Its surreal and weird to watch this play out!

 

Not surprising. A job site probably works with a lot of staffing companies and HR departments. They have to care that people are only able to work under certain conditions. Their job is to know the job market and they can't gaslight reality about it.

Economists, accountants and actuaries will likely play a far bigger role than medicine about freeing us from this nightmare. Probably banks, too. They don't cherry-pick or count selectively to please their employers or clients, that's a great way never to work in this field again. Dollars are dollars, you can't do the sort of shifty fraud like overlapping threshold when counting money. Well, at least not without getting sued and losing your job and professional license.

Although that's mostly simply because when you categorically refuse to try, even a tiny effort is worth more. It's hard to play a smaller role than being the main source of denial and discrimination.

 

Neurologists studying the neurological consequences of COVID don't appear personally concerned about those consequences. I wonder how much the belief that it happens to "others", you know, weak people, "catastrophizers", plays into this.

https://twitter.com/user/status/1591571501895266304

(Nothing special, just a photo of a conference with no mask in sight)

 

https://twitter.com/user/status/1592896958364282880

 

This reply to Dr. Davenport's thread resonated with me:
https://twitter.com/user/status/1592922633708134405

Text of the image:
A great quote from a study from Stanford University by a Chu et al: "Contrary to come sources which have intimated that patients affected by ME/CFS are reluctant to admit the role of psychological or emotional factors in their illness and cling unreasonably to a biological cause for their condition, our clinical experience, supported by this study's results, is that patients readily discuss such factors when their illness experiences are validated."

I tell people I trust about things like getting PEM or tired from emotions, but I tell doctors that this condition is as physical as cancer. (I don't see a contradiction between those two either, because I don't have dualistic view.)

 

Today, and fitting with a recent uptick, I am seeing a disturbing number of government officials, ministers, school boards and other public organizations explicitly talking about the "overwhelming" evidence that wearing masks, which ended a full year ago in most places and was far more limited that catastrophizers make it out to be, is responsible for the massive increase in mental illness in children.

So basically LC (and obviously now also from other viruses) in children is being explicitly blamed on masks and lockdowns that ended long ago. This appears increasingly to be the official position, no doubt with support from medical authorities. Either that or they play along anyway, which is the same thing.

Which makes the $1.15B NIH fund being wasted especially egregious, as it may turn out to be the only significant funding.

 

Research into Long Covid causes urgently needed, experts say

More research is urgently needed into the diagnosis and treatment of Long Covid which is affecting the lives of ‘tens of thousands’ of people, experts have said.

Persistent fatigue, muscle pain and memory loss are the main symptoms but there is a wide list of around 200 Long Covid-related health problems which manifest themselves differently in each patient, making diagnosis difficult.

One in eight people are thought to suffer from the debilitating effects of Long Covid a year or longer after they have contracted the virus. Of those who have been diagnosed, benefits agency UWV said 84% of sufferers had been declared unfit for work in the first nine months of 2022. In 9% of cases the situation is permanent.

‘This is a terrible thing to happen to people,’ Joost Klappe of patient organisation long covid told Nieuwsuur. ‘They lose everything, their jobs, their social contacts. If you want to give these people hope then start researching Long Covid properly now so they can be given the right treatment.’

The search for the origin of the complaints should be the main focus of the research, lung specialist and researcher Merel Hellemons said. ‘For a number of patients the current therapies, such as physio and occupational therapy are not enough. They are desperate and show no improvement and it is high time we found out why that is.’

In a reaction, health minister Ernst Kuipers said ‘it takes time to accumulate data to diagnose and treat a new illness’. He said a more efficient way of tackling the problem would be to pool research with other countries.

Some patients have been travelling to Germany to undergo costly blood filtering treatment, which is not available in the Netherlands. ‘I get why people feel they are not understood and turn to alternative treatments. But there is a potential risk and we don’t know if it helps,’ Hellemons said.

https://www.dutchnews.nl/news/2022/11/research-into-long-covid-causes-urgently-needed-experts-say/

 

Damn. So many physicians whining about how patients never talk about psychosocial stuff. All of which means is that the patients are not comfortable doing so with them, knowing it will harm them. They are the problem, but can't see it precisely because being the problem makes them unable to see it. Amazing.

Which is basically like being aggressive with someone and whining that they are not polite.

Other than in very specific scenarios, even if and when I recover, I will never, ever, mention or agree to any talk of this, will simply shut it down because I know how it can be used against me.

 

Especially when you are not accumulating data. Even more so when refusing to accumulate any data is excused by having refused to accumulate any data for decades. As a choice. It's absurd how there's just no accountability. Someone can be prosecuted for criminal negligence for leaving the access to a pool with no surveillance open but healthcare systems can simply choose to be fully negligent and no one cares, nothing happens. Absurd.

Although the proposition of pooling research is actually the first time I've seen the bloody obvious actually stated. That is if it's not just cheap virtue signaling, which it likely is. One absurd and very notable thing seeing it all happening is how excessively local everything about this has been, there are no economies of scale, no leveraging or pooling of resources, no logistics or coordination at scale, no collaborative efforts and no sharing of any kind. It's all down to the local clinic, where they do their own independent thing in secret behind closed doors, with the rest being mostly studies with obvious flaws that are starting to look frankly deliberate.

But for sure it takes a long time to accumulate data when you categorically refuse to do so and put no effort into it, in fact privately dismiss the whole thing as a bunch of nonsense. It also takes a lot of time to build a house when you don't bother doing any building or pay people to do it. It's pretty much a universal thing.

 

So.....one in 8 people, 10's of thousands of people (not hundreds of thousands) would suggest the entire world population is around 800,000, at the most (or at least that only 800,000 people, max, have suffered from a covid infection)

and I was under the impression that they were saying that the population was now 8 billion.

Not sure how far out that would be, 10,000 times out, 100,000 times out?

Maths, not the strong point of science/scientists/science writers these days it seems

 

Long Covid was discussed on the 8am news bulletin on BBC Radio One.
Said
-2 million people in the UK had it
-Much less likely in those aged 24 and under (or under 24)
-Had a teenager on who is in a wheelchair having previously played sports. His mother is fundraising for some (unspecified) treatment for him

 

BBC News — Long Covid: What's changed, and what we know now

(Spoiler: nothing it seems)

 

This just isn't true, what patients are seeing on the day to day is anxiety diagnosis. I get it the BBC has to hide the medical system has completely collapsed and increasingly have to lie about it but at some point everyone is going to realise they lied. As the lords debate showed the government has just 40,000 places a year in clinics (and its not even treatment) and yet a month there is about 100k new long haulers and yet even now most GPs aren't diagnosing it. The scale of this problem is enormous and the response is atrocious.

 

Odds are very good that this is the "pattern". Learning only works when you have quick and accurate feedback about how close you are to the real answer. If no one knows the clear answer learning on the job does not work because the process of learning is not operational. This is why and how machine learning works, it relies on previously solved problems and an evaluation of how close an answer is to reality, automating problems that are very labor-intensive is what it's all about.

It's beyond clear that learning strictly from experience does not work in medicine. Without a theoretical basis, nothing works. If it did, scientific research would not have been needed to figure out literally everything. Early clinical work was good for anatomy and basic stuff, what you can see rather easily, but everything complicated requires extensive research.

But this attitude right here is the point of failure: they think they are learning, they are not and they have no way to know it in the current model of healthcare. The response from medicine has been completely disastrous and they think they're doing great because they clearly cannot tell the difference between failure and success without a theoretical basis to validate to. Two sides of the same coin.

 

No idea who is behind this but the idea seems coherent:

https://twitter.com/user/status/1593634649657384960



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Monitoring app: Eureka Health