Article in Vice: The Medical System Should Have Been Prepared for Long COVID

Sly Saint

Senior Member (Voting Rights)
“Every virus has a post-viral syndrome,” said Putrino. “In a global pandemic we’re going to have a certain number of patients present with a post-viral syndrome, and shame on us for not being ready.”
Long COVID patients are far from the only ones in this situation. Millions of people suffer from similar chronic symptoms, many of them too debilitated to work a job or even leave their bed. They, too, have been told their symptoms are psychogenic. Those I spoke with recounted how they watched in horror as the first reports of post-COVID began to surface. They saw what was coming, even if the doctors and scientists didn’t.
In 1988, an essay in the British Medical Journal coined the term “heartsink patients” to identify patients who evoke in doctors “an overwhelming mixture of exasperation, defeat and sometimes plain dislike that causes the heart to sink when they consult.”

Among the characteristics associated with heartsink patients are thick clinical records, being female (in the original essay, 22 of those described were women and 6 were men), repeated visits to healthcare providers, and, most importantly, the technical term “medically unexplained symptoms” (MUS).
The classic modern example of medically unexplained symptoms leading to mistaken psychogenic diagnoses is myalgic encephalomyelitis or “chronic fatigue syndrome.” According to the CDC, an estimated 836,000 to 2.5 million Americans have ME/CFS, 90 percent of whom haven’t been diagnosed. ME/CFS is tremendously disabling,

https://www.vice.com/en/article/qjp...repared-for-long-haul-covid-patients-symptoms
 
Her visit followed a pattern, all too familiar to so-called COVID long haulers. “They did a bunch of tests. And at the end? The doctor asked me if I understood the power of suggestion.”

“I had no proof that I’d had COVID,” O’Brien continued. “I felt kind of crazy already, and he was validating my feeling of being crazy.”

This is just brilliant.

The rest of the article is very good too. It goes to the heart of the problem of what went wrong with ME/CFS and so many other illnesses: MUS and the associated belief system.
 
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Procrastination in action. Could they have prepared better for post-viral problems, or for a global pandemic in general? Of course, but budgets are quarterly or annual, and the tens of trillions of dollars extra for being unprepared won't show up on their budget sheets. Prepare for lots of responsibility denial. :grumpy:
 
And people with ME are in a good position to understand why it is not ready.

Good to see this article take aim at the foolish idea of diagnosing generalised anxiety that nebulous free range illness that is the panacea of the incompetent.

It's one thing for incompetent fools to run loose diagnosing science fiction it's entirely something else that medical systems, research funders and so-called science journals aid and abet this nonsense. We are seeing the results and they are horrific. And they were utterly predictable.

Non of the fairy-tale of BPS is done in isolation. Let loose on the world it has brought nothing but horrible suffering the cost of which will be so much greater than if those with power had dealt effectively with this fad.

BPS cultists cry foul and claim they are bullied. I suggest that what they are feeling is humiliation and that claims of bullying help push that aside and deflect those unpleasant feelings (I believe they have a treatment for this).

This is where greed (political aspect) and arrogance (eminence aspect) has brought us.
 
Diane O'Leary quoted, if I remember correctly, with a very high figure for MUS prevalence. Can't remember the rest.
I didn't understand it this way. I understood it to mean the prevalence of consults in which a clear cause for symptoms could not be determined. Which sounds about right, as the only way symptoms are acknowledged to be "real" is made through tests and it often takes many attempts to do the right test, leading to many consults in which symptoms are unexplained as a routine part of the job. Many common symptoms that aren't disabling fall in the category, people just deal with them as best they can.

Just as true with electronics or any other skilled profession. The difference is that you can't just throw away and replace your body, which is the normal way of dealing with problems whose caused cannot be explained, and that's not even accounting for how different it is to troubleshoot a machine, being able to take it apart and tests individual components, vs a human body.

I'd even suggest those numbers are higher. Truth is for the most part "real" symptoms are determined mostly by an arbitrary process, most of them are unexplained, even when they are acknowledged as real. At best medicine will acknowledge a symptom is associated with a disease. Doesn't mean it's explained, it often explicitly isn't.

Of course the problem is BPS zealots abusing this obvious ambiguity to mean psychogenic symptoms, but that's a different problem having to do with failure of execution and the lack of significant oversight or quality assurance, largely having to do with the main stakeholders in medicine, the patients, having no say in any part of the process.
 
I am not that impressed. The chief weakness I see is that if any doctor who is broadly happy to go with 'heartsink patient's MUS will see the article as ill-informed journalism and not testing their beliefs in any way. To be honest it is pretty ill-informed. The authority comes from 'One of the world’s foremost experts on the problems with MUS' despite the fact that I doubt a single person other than her would regard this is an appropriate description.

And what has MUS got to do with being unprepared for LongCovid anyway? Not much.
I can see the majority of readers as finishing the article thinking - 'OK, seems LongCovid is all in the mind too then- sort of Yuppie flu, right?'.
Rather than fluttering about like a butterfly with O'Leary and Brea why not get properly informed.
 
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Diane O'Leary quoted, if I remember correctly, with a very high figure for MUS prevalence. Can't remember the rest.

I didn't understand it this way. I understood it to mean the prevalence of consults in which a clear cause for symptoms could not be determined.

One of the world’s foremost experts on the problems with MUS is the philosopher and bioethicist Diane O’Leary. Studies of MUS put its prevalence at anywhere between 10 and 86 percent of outpatient visits; O’Leary splits the difference at 50 percent, still a remarkably high number.
'One of the world's foremost experts...' Really?!
I leave others to decide what those figures are supposed to mean.

ME/CFS qualified as medically unexplained because no biological cause had been conclusively identified and it had no standard diagnostic tests.
Is this right? I thought there were quite a lot of diseases well recognised as physical/biological from clinical symptoms and signs where the biological cause is yet to be eluctidated.

Dubbed the PACE trial, this controversial study essentially sought to vindicate what was already the status quo for patients—a combination of therapies meant to decondition their fear of fatigue. Fear, not physiology, was assumed to be the underlying cause.
Conflates 'deconditioning' and 'fear of exerclse'. Gets the publication date wrong too.

There's a section on the difference between illness and disease which sounds too much to me like the horrible Sharpe/Grecko article about CFS as 'illness without disease'.

Some of the other stuff O'Leary is quoted as saying I find problematic.
However, overlapping categories do not entail interchangeable categories. As a diagnostic tool, “the biopsychosocial model is a disaster,” Diane O’Leary told me. “There is such a thing as biological disease and it is different from mental illness.”
“A part of it is practical,” O’Leary said. “They’d be fighting all day with patients so now they say mind-body is a continuum. It’s just bullshit, using pseudo-philosophy to avoid a fight.”
Reminds me of her disastrous claim that CFS is the term for a psychological disorder, treatable with psychotherapy, and ME or ME/CFS is physical. I'm afraid the awarding of world expert status to someone who has got some important things about ME/CFS seriously wrong, and who, as far as I know, is virtually unknown in the medical world put me off the article.

To be fair, the rest of the article is OK. Though overly long.
 
And what has MUS got to do with being unprepared for LongCovid anyway? Not much.

In my opinion, a lot. ME/CFS and other illnesses would have been researched more without the MUS belief system (which explicitly says that no disease is present). Even if no progress had been made in understanding the biology well enough to do anything, the risk of long covid would have been taken seriously and countries would have reacted with more urgency.
 
the risk of long covid would have been taken seriously and countries would have reacted with more urgency.

I don't follow that. We were unprepared for a pandemic. If people in charge aren't bothered about people dying horribly gasping for breath then they are unlikely to be too bothered about longer term illness.

But I think my main point was that the lesson comes from ME specifically, not from the more recent vague story about MUS. After all LongCovid isn't MUS- it is by definition due to Covid. My impressions that mixing all these politically charged issues in this rather random way is most likely to leave readers confused, ending up thinking 'oh yeah sort of like yuppie flu then'.
 
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If people in charge aren't bothered about people dying horribly gasping for breath then they are unlikely to be too bothered about longer term illness.

Some were just uncaring but most were probably trying to balance the economic harm of lockdowns versus the risk of the illness and their calculations didn't consider the possibility of postinfectious syndromes in the younger population. In the first months, the narrative was that of an illness dangerous only to older people, with the rest hardly at risk. It was a disastrous miscalculation.

According to the MUS philosophy, ME/CFS is not a real disease but is caused by psychological factors like personality or stress, with the role of the infection downplayed.
 
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article said:
One of the world’s foremost experts on the problems with MUS is the philosopher and bioethicist Diane O’Leary. Studies of MUS put its prevalence at anywhere between 10 and 86 percent of outpatient visits; O’Leary splits the difference at 50 percent, still a remarkably high number.

I understood it to mean the prevalence of consults in which a clear cause for symptoms could not be determined. Which sounds about right, as the only way symptoms are acknowledged to be "real" is made through tests and it often takes many attempts to do the right test, leading to many consults in which symptoms are unexplained as a routine part of the job.

I found some data on the categories of things people are seen for in primary care in a region in New Zealand, I think I posted about it somewhere. At least in New Zealand, this idea that 50% of consultations are about symptoms where a biological cause is not known is rubbish. There are consultations for pregnancies and getting birth control drugs, consultations for heart disease, diabetes, infections, worn out hips and knees, poor kidney function, asthma. I don't see why it should be any different elsewhere, even with a wider interpretation of MUS that includes problems that just haven't been definitively diagnosed yet but will be.

Of course, if someone wants to start suggesting that the cause of your asthma, diabetes or heart disease or lung cancer or sprained ankle is your life choices or thoughts, or even that you have an ear infection because you want to stop hearing the world (and I have seen that proposed), then anything can be interpreted as being psychologically caused rather than biologically caused. At which point, words start to lose their meaning.
 
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this idea that 50% of consultations are about symptoms where a biological cause is not known is rubbish.

Exactly. Of course every detail of the causation of each problem may never be known but the vast majority of cases have a recognisable explanation. Pregnancy is due to babies and cystitis is due to. bacteria. In my rheumatology clinic unexplained problems were tiny proportion.

These figures are complete misrepresentations based on counting symptoms that are not explained. These are always present. If someone has a worn hip joint there will always be one slightly unusual feature like clicking. The person with cystitis may also have a headache - but so what.
 
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