Opinion Improving the nosology of Long COVID: it is not so simple 2023 Calabrese and Mease

Andy

Andy

Retired committee member
Abstract

Long COVID is a diagnostic label currently given to those suffering from a poorly understood state of incomplete recovery or who have development of a myriad of medically unexplained symptoms occurring in the wake of infection with SARS CoV-2 that is both poorly understood and controversial. Many of the features of one of the most common clinical endotypes of Long COVID are shared by a condition well familiar to all rheumatologists and one with a large body of epidemiologic, clinical and basic research accrued over many decades namely the syndrome of fibromyalgia. Some have recently suggested that Long COVID may merely be a new name for fibromyalgia and that this diagnosis is indeed the condition that many or most may be suffering from as a post infectious sequela.

In this Viewpoint we argue that while the parallels between the clinical syndrome experienced by many of those currently labeled as Long COVID and fibromyalgia are strong we should be not too quick to rename the disorder. We further argue that relabeling Long COVID as fibromyalgia is clinically reductionistic and any such relabeling may be attended by harm in both the design and execution of a future research agenda as well to patients who may be inadvertently and unfortunately pejoritised by such labeling. We further explore the parallels and differences between Long COVID and fibromyalgia and outline areas of needed future research and care.

Paywall, https://ard.bmj.com/content/early/2023/11/20/ard-2023-224844
 
Abstract said:
any such relabeling may be attended by harm in both the design and execution of a future research agenda as well to patients who may be inadvertently and unfortunately pejoritised by such labeling
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If a label of fibromyalgia is pejorative, and it often is, that illustrates a whole other problem. There's the same issue with labelling some people with Long Covid with ME/CFS.

Running away from existing labels largely due to the stigma they create doesn't help move the understanding of these conditions forward. It's perfectly possible to keep cohorts separate in research studies but recognise when people meet diagnostic criteria e.g. Covid-19 associated ME/CFS versus pre-Covid-19 ME/CFS.
 
It's too soon to throw in the towel due to impatience or irritation and refuse to distinguish between known symptoms clusters of: FM symptom clusters vs ME symptom clusters vs LC symptom clusters. If symptom clusters are at the moment all that can be detected in most cases of LC, so be it, for now.

Just as clinical experts distinguish between FM and ME, based on symptoms,so, after adequate study, LC will be mapped out and perhaps/perhaps not lumped in the ME predominant side. or less "severe" into the FM predominant camp.

Opinions are not necessarily expert, nor are they necessarily scientific.
 
Fibromyalgia is now considered within the spectrum of chronic overlapping pain states which include other conditions such as tension headache, chronic low back pain and irritable bowel syndrome, all sharing the basic mechanism of nociplastic pain. The term ‘nociplastic pain’ is employed to represent pain caused by central sensitisation, a mechanism of pain generated in the central nervous system, distinct from nociceptive pain which is caused by non-neural tissue inflammation or injury, and neuropathic pain which is caused by diseased or damaged nerves.
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It is increasingly recognised that a significant proportion of patients who experience chronic inflammatory conditions, chronic pain conditions, other chronic illnesses, chronic stressful experiences such as war, as well as patients with more short-term illnesses including viral diseases, will experience the phenomenon of centrally sensitised nociplastic pain along with other symptoms such as fatigue and cognitive dysfunction, in combination with nociceptive pain and inflammation. Whereas so-called ‘primary’ fibromyalgia occurs in 1%–2% of the general population, concomitant or ‘secondary’ fibromyalgia occurs in much higher proportions, for example, 20%–30% of autoimmune disease patients.
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we believe that the rich literature on fibromyalgia, in terms of its epidemiology, risk factors, clinical spectrum and basic biology, has been inadequately considered within the field of Long COVID investigation and needs to be examined critically to optimally guide potential pharmacological and nonpharmacological interventions selected for off label use as well as clinical trials for those afflicted.
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From this point, however, we believe further parallels between fibromyalgia and Long COVID become less clear, largely driven by the facts that the root causes and basic mechanisms responsible for both the syndrome of fibromyalgia and to an even a greater extent Long COVID are far from clear and thus both should be considered as works in progress.
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A further point of contention with Mariette’s essay is his description of fibromyalgia as a psychosomatic syndrome close to post-traumatic stress disorder. While we recognise emotional dysregulation is prominent in most theories of fibromyalgia pathogenesis others have argued that this should indeed be considered a working hypothesis as there are very few, if any, prospective longitudinal studies conclusively demonstrating that psychological stress causes fibromyalgia.
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In addition, several studies have shown that many individuals with chronic pain who have high levels of depression or catastrophising experience rapid improvements in these domains when successfully treated for their pain, suggesting a strong bidirectional relationship. As a result, we caution that strong assertions supporting the belief that fibromyalgia resides in the ‘mind’ may be equated with a matter of personal weakness which is counterproductive and, as cautioned by others, has the potential to drive the field inadvertently backward and away from other putative neurobiological mechanisms.
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We suggest that such beliefs and over emphasis on the role of neuropsychological factors in the pathogenesis of fibromyalgia may have contributed to the paucity of attention to many potential lessons that could be drawn from the field of fibromyalgia research. An observation in support of this assertion is the absence of any mention of the term fibromyalgia in two otherwise thorough and timely reviews of Long COVID in high-impact publications this year.
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Referencing Long COVID: major findings, mechanisms and recommendations (2023, Nature Reviews Microbiology) and The immunology of long COVID (2023, Nature Reviews Immunology)
 
many of the most seriously afflicted patients also closely resemble another poorly understood condition namely myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS also bears similarities and some degree of overlap with fibromyalgia as they frequently coexist, but ME/CFS is generally far more severe with a worse prognosis and characterised by profound post exertional malaise a feature not well studied in fibromyalgia. Another increasingly recognised and overlapping group under the Long COVID umbrella are those with features of dysautonomia including at times disabling postural orthostatic tachycardia syndrome (POTS).
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In closing, we counsel to tread slowly in efforts to rename Long COVID for several reasons. First, from a scientific perspective, we feel our current understanding of post COVID-19 sequelae is woefully incomplete and renaming with another term such as post fibromyalgia like condition, a disorder that is also incompletely understood, is not productive.
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Second, we point out that fibromyalgia is commonly associated with both acute and chronic illnesses with a multitude of mechanismsto suggest that fibromyalgia is the only condition present may close our eyes and minds to deeper understanding of the pathogenic mechanisms present in the patient in front of us, and thus the possibility of multiple therapeutic paths.
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Third, we would remind all that the term Long COVID itself came not from basic or clinical scientists but from a collaboration of patients, support groups and digital advocacy, the very people most severely affected by the disorder, and thus is suffused with deep meaning. Accordingly, there is a valid degree of ownership here and any name change from the current should be made collaboratively with patients.
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For now, we appear closer to the beginning than the end of the challenges posed by Long COVID and strikingly still without clinically validated diagnostic testing or any approved therapies. On the other hand, rheumatologists have much to offer patients with Long COVID as perhaps among all specialists we are familiar with diagnostic uncertainty and the challenges of limited therapies for many diseases. We also like to think that we rheumatologists who have long provided both care and caring to patients without easy answers or curative therapies well know the value of validating symptoms, expunging patients of guilt, dispelling blame and the establishment of true working relationships. We can always change the name later.
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We suggest that such beliefs and over emphasis on the role of neuropsychological factors in the pathogenesis of fibromyalgia may have contributed to the paucity of attention to many potential lessons that could be drawn from the field of fibromyalgia research.
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Big duh here. But I guess it has to be said. It turns out that when you invent a bunch of horseshit, you end up with a bunch of horseshit. And when you do that in medicine to millions of people, it's about as bad as it sounds when you say it out loud.

Although the original essay about Long Covid being fibromyalgia was just so profoundly ignorant that it didn't really merit a response, but I guess it's better than not. But obviously decades have been thoroughly wasted on delusional fantasies about the magical powers of the mind to cause illness just because it's hard to figure out. It's pretty absurd that such flowery language has to be used when in fact most of the profession is in dire need of a slap to the face over this, and then probably as many as it takes for them to stop just straight up ruining lives while disrespecting them as much as is humanly possible.

This has a weird feel of concentration camps after a war with people dithering around wondering if it would be fair to let them out because, uh, reasons, I guess? Like it would be insulting to those who made the decisions, or whatever? Because you still have to work with them? Tens of millions of lives have been ruined by an insane ideology, and the strongest commentary that can be mustered up is some "golly gee maybe we shouldn't have done it quite so harshly just saying don't judge me oh please don't lose respect for me for saying you did something a bit wrong when actually you pretty much condemned tens of millions to needless suffering and early death while actually regressing not just this profession but scientific discovery".

But I guess we should feel grateful for that "golly gee bit of a pickle we did here" since it's basically the most physicians are willing to give. Good grief. Just thinking about how loud this has all been, how thoroughly Long Covid should have debunked this whole insane circus. It's like ignoring a giant blaring alarm going on right in your face with the power of a dozen jet engines and a light more blinding than staring right at the noon Sun.
 
It is increasingly recognised that a significant proportion of patients who experience chronic inflammatory conditions, chronic pain conditions, other chronic illnesses, chronic stressful experiences such as war, as well as patients with more short-term illnesses including viral diseases, will experience the phenomenon of centrally sensitised nociplastic pain along with other symptoms such as fatigue and cognitive dysfunction, in combination with nociceptive pain and inflammation.

When speculation becomes 'facts', via the magic of sophistry and arbitrary attribution.
 
Sean said:
It is increasingly recognised that a significant proportion of patients who experience chronic inflammatory conditions, chronic pain conditions, other chronic illnesses, chronic stressful experiences such as war, as well as patients with more short-term illnesses including viral diseases, will experience the phenomenon of centrally sensitised nociplastic pain along with other symptoms such as fatigue and cognitive dysfunction, in combination with nociceptive pain and inflammation.

When speculation becomes 'facts', via the magic of sophistry and arbitrary attribution.
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Or re-writing to:

"It is increasingly recognised that a significant proportion of patients who experience chronic inflammatory conditions, chronic pain conditions, other chronic illnesses, chronic stressful experiences such as war, as well as patients with more short-term illnesses including viral diseases, DO NOT GO ON TO experience the phenomenon of centrally sensitised nociplastic pain along with other symptoms such as fatigue and cognitive dysfunction, in combination with nociceptive pain and inflammation."

The vast majority never do - otherwise pretty much everybody would have this. And they don't. THE END
 
Sean said:
It is increasingly recognised that a significant proportion of patients who experience chronic inflammatory conditions, chronic pain conditions, other chronic illnesses, chronic stressful experiences such as war, as well as patients with more short-term illnesses including viral diseases, will experience the phenomenon of centrally sensitised nociplastic pain along with other symptoms such as fatigue and cognitive dysfunction, in combination with nociceptive pain and inflammation.

When speculation becomes 'facts', via the magic of sophistry and arbitrary attribution.
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It's really something that in speaking of being careful about useless speculation, the main argument here is still based on... useless speculation.

Central sensitization and nociplastic pain are useless concepts invented to give credibility to the old psychosomatic beliefs. It's really frustrating that even after it's all been debunked, it just keeps going precisely because it was built to sound pseudoscientific. So the only change we'd get here is to move away from the old fairy tales, and onto... the new pseudoscientific fairy tales. So a lateral movement that comes back to its origin.

The emperor may not be wearing a sumptuous golden robe, but he is still wearing a sumptuous golden, uh, garment. Yes, yes, that's it, it's not a robe, it's a garment. Problem solved.
 
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