Opinion 'Long covid' and how medical information is causing illness: A philosophical issue affecting public health, 2023, Garner, Vogt

[Kalliope]

Quote:

This article illustrates how the framing of post-covid condition by mainstream medicine may actually be contributing to the illness. Through its actions and words, mainstream medicine may be contributing to the production and the persistence of symptoms, and thus be a iatrogenic factor. We first need mainstream medicine to acknowledge the possibility that these mechanisms are at play. Then, changing the narrative about and conceptualisation of the symptoms, is part of the solution. As Barsky notes, merely explaining to people how nocebo responses and stress may create and prolong symptoms may help.1

This scientifically informed narrative needs to explain and normalise how symptoms and physiological changes are produced in the body in a social and environmental context. This includes the relationships and influences between the brain, the rest of the body, thoughts, expectations, and perceptions. Importantly, we need to include the experiences of people that have recovered in shaping research and the narrative about the illness.12, 13 Available biomedical findings must also be interpreted in light of a broader explanatory framework appropriate for conditions with persistent symptoms. The matter is urgent, both in terms of public health and professional ethics.

https://onlinelibrary.wiley.com/doi/full/10.1111/jep.13934

 

[Midnattsol]

I'm not sure what media Paul and Henrik reads, but I do not share their opinion that the narrative is not already what they are asking for. Case in point when Wyller's study on how long covid was not explained by covid infections it was all over the news. Other science gets way less press. And of course it was ignored how Wyller used a control group of close contacts with the infected who could also have infectious symptoms when they were recruited

 

[rvallee]

It's actually famous how medicine has thoroughly ignored and failed to do anything, words and actions both. So that's quite a tall tale they've got going on here. There is still basically no information out of medical sources about Long Covid, so the entire premise is plain silly. Nearly all doctors are either plain denying or massively minimizing, this is what nearly all patients report and it's also the dominant theme going on 4 years.

And they are basically presenting the current paradigm, the source of the failure, as the solution, which they obviously know is the case. Really impressive stuff from this brain trust.

That this can only be published as opinion says everything about how this paradigm came to be and dominate. They are stories some doctors tell themselves, the stuff of hollow Earth or the Moon being made of cheese before NASA went there. It shows that far from being folklore, those tales and narratives can, and do, in fact come from institutions with the intent to manipulate and mislead towards a narrative preferred by those with power and influence.

The experience of those who have recovered is mostly that they don't know why they recovered, most did nothing special. This is also well-known, and it shows the lengths to which quacks and ideologues can go when they are enabled by a dysfunctional system that is unable to accept its own inadequacies. Talk about projection here. Good grief.

 

[rvallee]

scientifically informed narrative

Words truly mean nothing to charlatans. It's that nearly the entire medical profession agrees and has parroted those that is absurd. It's what failed, and they pretend like it's the solution.

It really does explain everything about the major role religion, beliefs and superstition has played in our history and pre-history. There is such a deep need to assign preferred beliefs that even a so-called scientific profession can fall prey to it this late in its development.

Then again it's showing how limited the development of medicine has been, and how it's now severely limiting its ability to move forward. No scientific discipline can keep on progressing while keeping myths and beliefs from centuries ago. They have deep, deep issues to deal with, and no ability to self-reflect on them. They can't even see their own flaws. It's so much like politics.

 

[Trish]

Perhaps a good starting point in reading this article would be the number of times they say: "we believe".
This article is a statement of belief with a few weak cherry picked references.


The reference they give (Ref 7) to an ME/CFS study of 14 people is the article on one patient who did LP and a claim that they also included 13 others.
Thread here:
Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

Previous research has shown that the belief that the problem is caused by a physical defect (i.e., a standard biomedical conceptualisation) is associated with poor prognosis.8

The reference (Ref 8) is to this 2005 article:
A systematic review describing the prognosis of chronic fatigue syndrome (2005), Cairns, R & Hotopf, M

Although space does not permit a thorough review, a literature is emerging to support this biopsychosocial hypothesis, including data that anxiety, worry and perceived stress increases the risk.9

Associations of Depression, Anxiety, Worry, Perceived Stress, and Loneliness Prior to Infection With Risk of Post–COVID-19 Conditions, 2022, Wang et a

Here's their self aggrandisement statement at the end:

REFLEXIVITY STATEMENT

HV has worked in general practice, public health and medical ethics. He is the former leader of Recovery Norway, and organisation consisting of people who have experienced recovery from post-viral syndromes and other illness commonly labelled “medically unexplained”. PG is a medical epidemiologist who has worked in evidence synthesis in infectious disease for 30 years, with personal experience of post-covid syndrome, who recovered using psychological approaches and physical activity.

 

[cassava7]

Perhaps the journal should consider inviting other authors for an opposing viewpoint that attempts to lay out why some academics, among which eminent ones, are so keen on psychologizing long Covid and post-acute infection illnesses?

 

[Trish]

I have just reread the article. It reads like a rather childish set of beliefs based on little more than their personal interpretation of their own experience of recovery and a petulant grumble that nobody is listening to them.

 

[Hutan]

A recent Norwegian study showed half with adolescents with PACC as defined by WHO had never been infected with Covid-19, pointing us towards other causes than the virus itself; and a theoretical model using Bayesian approaches concluded that the constant messaging of irreversible tissue damage as a cause of Long Covid is 'predisposing, precipitating and perpetuating' factors for the syndrome.10, 11

10
Selvakumar J, Havdal LB, Drevvatne M, et al. Prevalence and characteristics associated with Post–COVID-19 condition among nonhospitalized adolescents and young adults. JAMA Netw Open. 2023; 6(3):e235763.

Forum thread -
Jama - Prevalence and Characteristics with Post-COVID-19 Condition Among Non-hospitalized Adolescents... - Selvakumar, Wyller et al, 2023
That paper, written by a large number of BPS proponents, had lots of problems.

One was that they assumed negative tests equalled no SARS-CoV-2 - which of course they do not.
Another was that the control group were young people who had been tested for Covid-19 - so, if they didn't have Covid-19, then they had some other cause for their symptoms, which a. might have also caused an ME/CFS reaction, and b. might in any case account for lingering symptoms.

And, a major one was that they used a hopelessly permissive definition of the 'post-COVID-19 condition'. Yes, that definition was used by others, yes it is the WHO definition, but it doesn't make it right. If the definition includes every little incidence of a symptom, then of course the numbers of people with symptoms will be similar. It doesn't address the question of whether there is a difference in the presence of collections of symptoms that are disabling. These researchers could have sought to address that useful question, but they instead chose to produce a paper that just muddies the waters.
As CRG said:

Even prejudiced agenda pushing researchers can occasionally happen upon a truth - the WHO classification was at best a stop gap Pandemic response and its continued usefulness has to be in doubt.

 

[Sean]

Through its actions and words, mainstream medicine may be contributing to the production and the persistence of symptoms, and thus be a iatrogenic factor.

When accusation becomes confession.

 

[NelliePledge]

When accusation becomes confession.

Freudian slip

 

[SNT Gatchaman]

The use of the term "mainstream medicine" is - shall we say - cringe.

 

[NelliePledge]

The use of the term "mainstream medicine" is - shall we say - cringe.

Sadly not a novel reaction to the sermons of this pair

 

[Milo]

I would love if doctors who contracted Covid and developed Long Covid could each write a letter to the editor in response. I think it would be meaningful to put these clowns where they belong.

 

[Keela Too]

It’s interesting how we, the patients, have a mistaken view of our illness, but at the same time the view of ONE SINGLE patient should be taken as definitive because he cured himself!

How does he not see that using his own n=1 experience as the clincher in his argument, puts doubt on his comprehension of the rest of it?

Edit to add:
From the Reflexivity Statement

PG is a medical epidemiologist who has worked in evidence synthesis in infectious disease for 30 years, with personal experience of post-covid syndrome, who recovered using psychological approaches and physical activity.

 

[Milo]

It’s interesting how we, the patients, have a mistaken view of our illness, but at the same time the view of ONE SINGLE patient should be taken as definitive because he cured himself!

How does he not see that using his own n=1 experience as the clincher in his argument, puts doubt on his comprehension of the rest of it?

Edit to add:
From the Reflexivity Statement

We should ask all infectious disease doctors to see how many HIV patients cured themselves using psychological approaches?

 

[Creekside]

"Although space does not permit a thorough review," -> "We ignored any literature that didn't support our hypothesis."

 

[rvallee]

I have just reread the article. It reads like a rather childish set of beliefs based on little more than their personal interpretation of their own experience of recovery and a petulant grumble that nobody is listening to them.

And yet the entire medical profession is not only listening to them, they have applied this very model from the start and continue pushing it every single day to most people with LC.

They're just grumbling that it's failing and people are pointing it out, want to simply enforce the belief that it has worked. Psychosomatic ideology is a messaging thing, it was always about pretending that it works.

They got everything they could have ever wanted here, and are still unhappy about it. But they can't think of themselves as being wrong and so are tilting at reality instead of having the maturity to self-reflect because, well, the entire medical profession is following their approach exactly!

No one can succeed while being completely detached from the consequences of their errors.

 

[Andy]

And yet the entire medical profession is not only listening to them, they have applied this very model from the start and continue pushing it every single day to most people with LC.

the entire medical profession is following their approach exactly!

The entire medical profession? Every single one? There is not one person in the medical profession who is treating patients differently?

 

[rvallee]

The entire medical profession? Every single one? There is not one person in the medical profession who is treating patients differently?

We're talking about maybe 4-5%, so pretty much, yeah.

I'm talking about systems here, not individuals. This is not a profession warm about contrarian choices.

 

[Andy]

We're talking about maybe 4-5%, so pretty much, yeah.

I'm talking about systems here, not individuals. This is not a profession warm about contrarian choices.

Right, so not the entire medical profession, and therefore not the entire medical system, how else do you explain the progress that has been made with NICE and elsewhere? And further efforts to improve the situation aren't helped by making over the top statements; we should leave the unbelievable hyperbole to Garner and the like.