Long Covid in the media and social media 2023

When you say that patient’s medical records are flagged, what exactly do you mean? Is there a free text box where judgements such as “opiate seeker” or “potentially violent” are written plainly, or are they coded? And if the latter, is that code published, or a secret? Is its very existence secret?

Also, are you saying that this happens on the hospital/trust record, or on the primary/GP record?

 

There is a recent NHS digital scheme for flagging reasonable adjustments on the summary care record, which is the one most people can access digitally via their GP, and which in theory acute trusts can also access, although in practice hospitals tend to have their own systems and only communicate with primary care by letter.

If that’s the best they can do for a clinically important flagging requirement, I would be surprised if there was a more mature and robust system for identifying us heartsink malingerers.

 

It really is a combination of several factors, but the shocking thing is that almost all of those factors are a choice, made deliberately and confidently. They all stem from the same root, though: the biopsychosocial ideology. Which IMO is more of political ideology than anything else, is basically neoliberal medicine: yes, lots of suffering, how can we monetize it?

It sounds radical but I really mean it, medicine focusing on mental health as they did, especially the BPS ideology, is probably the single worst thing to have happened to how we deal with not only mental health, but health in general. It wasn't ready to begin with, and still isn't because the foundations are completely hollow. It even set medical science back decades by obsessing over shadows on the wall, because it was done in the worst way possible: blindly charging ahead and refusing even the premise that outcomes aren't perfect.

It may rival Lysenkoism in pure harm, except it's happening to the entire world at the same time, in a slow burn that erodes both quality (clearly getting worse) and quantity (delivering less and less despite always getting more money).

As a result, fully liberalizing medicine would probably end up doing more good than harm. It's so far back that even all the harm this would do would add up to a positive absolute. It would do new harms, but the current system does so much harm already that I think it would still be less harm overall. There's already such a large alternative medicine industry anyway, and the veil of secrecy probably hides at least as much harm behind closed doors, and privacy & gagging laws. The benefits would be worth it, things are that bad.

 

I have never seen the flags or how they are recorded. I'm just saying that it takes no more than a second from looking me up on a computer, to then being scowled at. So there must be a warning that pops up as soon as my record is accessed in a surgery or hospital and I've had the same experience in GP surgeries and hospitals. I'm sure there is a lot of record sharing in the NHS.

 

In Sweden, one common version of this used to be a four letter code literally written in the patient's medical records, as well as passed on by word of mouth between colleagues.

SVBK (sveda-, värk- och brännkärring), which literally translated means something like "sting, pain and burn hag".

https://sv.wikipedia.org/wiki/SVBK

Nowadays they have to be more careful what they write, because it's so easy for patients to read their own records.

 

Exactly the same here. The days are gone when doctors could get away with PFO*, TEETH** or NFN*** on their notes to each other, because patients are now routinely cc’d and can often access their summary records.

* Pissed, fell over
** Tried everything else, try homeopathy
*** Normal for Norfolk

 

On 19 May 2023, the US Department of Health and Human Services (HHS) advised, “Repeat COVID infections increase your risk for both hospitalization and Long COVID.”

https://johnsnowproject.org/primers/us-hhs-advises-on-risk-of-covid-19-reinfection/

 

Why is the medical community still ignoring long COVID?
https://thehill.com/opinion/healthc...-medical-community-still-ignoring-long-covid/
By someone who got ME in 2017. Extensively discusses how doctors ignored PEM and that they need to pay attention to it.

 

In the latest episode of the podcast Osterholm Update: Covid-19, Dr. Michael Osterholm says he has developed Long Covid after his recent, and first, round with Covid-19. He had been vaccinated six times I think, and also took Paxlovid when he realised he had been infected.

It's hasn't been three months yet since his infection, so I believe it's too early for him to self diagnose with Long Covid. But I noticed he told an anecdote he had shared in a previous and quite recent episode, which may suggest some cognitive issues, and he said he's struggling among other with his memory. Hope he will be among the lucky ones who will have their symptoms resolved with time.

But I am glad he is speaking up as an MD about experiencing post viral issues.

https://www.cidrap.umn.edu/covid-19/episode-131-covid-fog

 

Contradictory data: New-onset, self-reported long COVID after coronavirus (COVID-19) reinfection in the UK discussion here: https://www.s4me.info/threads/new-o...ovid-19-reinfection-in-the-uk-2023-ons.33431/

 

I've heard some experts claim long term sequela post covid is cumulative, others, including Dr. Eric Topol, saying the risk reduces with more infections. Could both be true? Are there any studies on this broken down into possible sub groups with higher or lower chances for developing chronic disease post plural infections?

 

This seems to be the only substantial study to suggest reinfection increases risk of PASC, Acute and postacute sequelae associated with SARS-CoV-2 reinfection (S4ME) - the authors wrote: "Our results show that beyond the acute phase, reinfection with SARS-CoV-2 contributes substantial additional risks of all-cause mortality, hospitalization and postacute sequelae in the pulmonary and broad array of extra pulmonary organ systems."

That study, although using a very large database, had significant limitations including: "Although the Veterans Affairs population which consists of those who are mostly older and male may not be representative of the general population, our cohorts included 10.3% women, which amounted to 589,573 participants, and 12% were under 38.8 years of age (the median age of the US population in 2021), which amounted to 680,358 participants. Subgroup analyses were not conducted by age, sex and race." It does seem that this sole study is what the HHS as reported approvingly by the John Snow project, is basing its claim that: “Repeat COVID infections increase your risk for both hospitalization and Long COVID.”

The interchange of 'PASC' with 'Long Covid' is a source of ongoing confusion and while researchers continue with conflation of the two, I doubt much clarity will be arrived at. However there are some basics that seem clear across a range of studies: 1. On average Covid 19 hits older people harder than younger people. 2. PASC has been characterised as 100 types occurring in single and multiple combinations. 3. On average more acute disease produces more and longer lasting PASC. 4. Any disease burden additional to PASC is cumulative for incapacity. 5. Covid vaccines are (to relative degrees) protective against severe illness, and in consequence are reductive of numbers and severity of PASC.

 

I think people are confusing cumulative and incremental risk. Imagine this:

• Infections: 1, risk: 10%
• Infections: 2, risk: 15%
• Infections: 3, risk: 18%
• Infections: 4, risk: 19%
• Infections: 5, risk: 20%

The cumulative risk continues to increase indefinitely, getting closer and closer to 20%, but the risk from each individual infection decreases. Nobody is using the necessary language to describe this, leaving us in the dark as to whether it's cumulative or incremental risk.

 

How learning to treat Long COVID can help those struggling with Chronic Fatigue Syndrome as well

Some experts say the current crisis of Long COVID is related to our government’s neglect of similar post-acute infection chronic illnesses like ME/Chronic Fatigue Syndrome in decades past.

https://www.bostonglobe.com/2023/05...truggling-with-chronic-fatigue-syndrome-well/

 

Anyone have access to this Boston Globe piece?

 

Maybe it is not the same for everyone but personally I could just click on the "read the full article" button and voilá, I could read it. I think before that there was also some pop-up trying to get me to subscribe but I could just close that too.

 

Interesting. It doesn't let me read it here in the US unless I subscribe.

 

I was able to read the article in Canada.

 

Full access in UK

 

The first time I tried to access it I was asked to subscribe. The second time I tried to access it it partially showed up. I did have to click on "Read full article".