Transforming biomedical uncertainty: the sociohistorical origins of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), 2026, Cross

[forestglip]

Transforming biomedical uncertainty: the sociohistorical origins of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)

Cross, Sally

Abstract
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious and disabling long-term conditions characterised by uncertainty surrounding their aetiology, diagnosis and treatment. People with ME/CFS struggle to be understood, taken seriously and supported with their illness.

At least since the 1990s, ME and CFS have been considered by many to be related, overlapping or synonymous with one another. However, the concepts originated from different sociohistorical contexts.

This article disentangles the histories of ME and CFS, roots them in the UK and the USA respectively, and compares how they emerged as medical and scientific objects. Drawing on a critical literature analysis of medical texts between 1950 and 1990, I explore how both ME and CFS materialised through the regulation of uncertainty within biomedical systems.

In both cases, uncertainty was transformed into knowledge by systematically obscuring certain aspects of illness. These transformations shaped what could be known about these conditions in the decades to come and may be at the root of the epistemic injustices experienced by patients.

Those who campaign for more scientific research into ME/CFS should be wary of the propensity for biomedicine to generate ignorance in the face of these complex conditions. This analysis contributes to a growing body of research on the medical sociology of ignorance, further illustrating the value of uncertainty and ignorance as heuristic tools for understanding the politics of knowledge production within biomedical systems.

Web | DOI | Medical Humanities | Paywall

 

[Andy]

Those who campaign for more scientific research into ME/CFS should be wary of the propensity for biomedicine to generate ignorance in the face of these complex conditions.

Which, taking it at face value, might be easier to do if the paper wasn't behind a paywall....

 

[Andy]

Author's university profile page

Overview

I am a Research Assistant, and completing PhD, based at the Centre for the History of Science, Technology and Medicine, University of Manchester. My PhD is focused on fibromyalgia and ME/CFS both in their contemporary historical developments and in the everyday experiences of clinicians, researchers and patients. This research is part of 'Multi-layered Medical Uncertainty', a Wellcome Trust-funded project (led by Dr. Cinzia Greco).

My work is situated at the intersection between medical humanities, science and technology studies, anthropology and sociology.

Thread for the project mentioned above here.

 

[Jonathan Edwards]

I have the pdf if anyone wants to DM me.

The paper is long. It covers a lot of what members here are very familiar with - Royal Free, Lake Tahoe, McEvedy and Beard. The author seems to conclude that ME/CFS is psychosomatic but I must have skipped the bit that explains that.

The main problem is that the author has completely missed the fact that the names given to acute epidemic illnesses with apparent neurological signs should not be confused with the names for the long term disabling illness of ME/CFS. So the piece ends up not making much sense.

 

[Jonathan Edwards]

I had a full read through. Notably the author is a fan of dissing 'mind/brain dualism' while apparently believing in mind/brain dualism (as per usual).

One sentence stood out:
This analysis highlights the distinct origins of ME and CFS prior to 1990 showing how both halves of ME/CFS emerged.
It misses the point that ME/CFS has nothing much to do with either the Royal Free epidemic or the Lake Tahoe epidemic, which are what the piece tries to account for. It completely misses the fact that the concept of post-viral fatigue ran through all this from the 1950s or before.

The piece raises the interesting possibility theat there weren't even any epidemics at RFH or Tahoe, just a sudden interest by a physician in a cluster of ill people. I doubt that. Certainly in 1955 if an epidemic was due to an unknown variant of the enterovirus or coronavirus group nothing would have shown on test because the tests only showed known viruses. Electronmicroscopy was not available.

I end up thinking this is yet another example of humanities voyeurism - trying to make capital out of extracting sociopolitical truths out of the mess of interactions between sick people and doctors. And being from an ill-informed humanities armchair and focusing on newsworthy proclamations rather than the opinions of the mass of doctors who by and large are pragmatic and sceptical about such things, the end result is a bit of a nonsense and likely to perpetuate memes that could do with being buried.

 

[ME/CFS Science Blog]

The author seems to conclude that ME/CFS is psychosomatic but I must have skipped the bit that explains that.

I'm not entirely sure that she takes this position. She seems to criticize both psychosomatic and biomedical approaches, although I only skimmed the article.

Some sections from the discussion section:

This analysis illuminates uncertainty and ignorance, differing significantly from previous histories of ME/CFS that argue with certainty, on a foundation of biological essentialism, that ME/CFS is a psychosomatic illness.3 4 I follow Aronowitz6 in my questioning of biomedical models of ME/CFS; however, this analysis differs from his in several ways.

....

I have shown that while their origins can be rooted in particular sociohistorical contexts, both ME and CFS emerged as ways to regulate biomedical uncertainty. Outbreaks of unusual, disabling symptoms of an unknown cause were transformed into clinical syndromes and scientific objects. In doing so, knowledge of these epidemics was obscured rather than generated. This production of ignorance may have limited our capacity to understand ME/CFS and created the conditions for psychosomatic research to thrive. When biomedical certainty is entangled with the legitimacy of medical conditions and the rights of people to be ill, disabled and receive care, ignorance can be favourable over acknowledging what we do not know

The article discusses the origin of ME and CFS and subsequent discussions about it, but it's not so clear what its findings or conclusions are.

 

[Yann04]

I'm not entirely sure that she takes this position. She seems to criticize both psychosomatic and biomedical approaches, although I only skimmed the article.

Some sections from the discussion section:

....

The article discusses the origin of ME and CFS and subsequent discussions about it, but it's not so clear what its findings or conclusions are.

Interesting.

Why do they argue biomedical classification of an unknown syndrome creates ignorance? That wasn’t clear to me from the abstract or snippets shared here.

—-


Edit: Removed reply to deleted post

 

[Jonathan Edwards]

I'm not entirely sure that she takes this position. She seems to criticize both psychosomatic and biomedical approaches, although I only skimmed the article.

Right, this was how I read it on first pass. She goes for a mind-body interaction approach that supposedly includes both psychological and physical aspects and denies a dualism that separates the two - which is the BPS position as stated, if not as practiced.

 

[Jonathan Edwards]

Why do they argue biomedical classification of an unknown syndrome creates ignorance?

She seems to be toeing the BPS line that biomedical is 'dualist' because it excludes the mind.
Her conclusion seems to be that uncertainty shoudlk be embraced. Which is fairly obvious to most people. You get a different view if you focus on published claims of this or that but they do not reflect what people actually think very much.

 

[MrMagoo]

The history of Science the history of Medicine the history of Technology. Way to make humanities sound like something it’s not.
Is this hoping to contribute to the biomedical ignorance perhaps?

I don’t really recognise ME and CFS as different and separate, that’s a contentious definition right there, shaky foundation to build from.

 

[rvallee]

One of the things that Long Covid has made clear is that the focus on outbreaks is entirely wasted, there are no outbreaks too large that medicine won't miss entirely, and for sure they can miss a huge mass of cases without any localized outbreaks and never notice anything. The outbreaks are more obvious to notice, but they don't matter much on their own, it's been obvious for years that many infections lead to similar outcomes, localized or not, and likely always have.

It's a bit like how tornadoes are wind events that are far more noticeable than just regular wind, but since everyone pretty much missed all the tornadoes, obviously they can miss all the other wind events. None too blind as people who refuse to see what's right in front of their eyes.

 

[Jonathan Edwards]

I don’t really recognise ME and CFS as different and separate, that’s a contentious definition right there, shaky foundation to build from.

I thin the author rightly identifies that ME and CFS were different concepts. One was a concept of an acute epidemic viral illness. The other was a concept of a chronic illness that in Lake Tahoe had been misinterpreted as an epidemic.

But then ME switched to being used as a concept of a chronic illness so that ME and CFS could be applied to the same ill people. Except that in many cases the people using the terms had different ideas about their implied causes.

The author seems to miss the fact that a disease concept is not the same thing as a group of diseased people. And in doing so they have lost touch with the people who matter.

 

[Hoopoe]

In both cases, uncertainty was transformed into knowledge by systematically obscuring certain aspects of illness. These transformations shaped what could be known about these conditions in the decades to come and may be at the root of the epistemic injustices experienced by patients.

Is the author suggesting that historical medical misinterpretations lead to a false narrative about ME/CFS, which patients have adopted, but which doctors generally reject, and that this generates experiences of what patients feel is the injustice of not being believed?

While there are small groups of patients who are very attached to historical conceptualizations of ME or CFS, the typical patient experiences epistemic injustice is straightforward disbelief about the subjective symptoms. It has nothing at all to do with historical conceptualizations.

I also believe that in response to this disbelief, patient groups have sought to strengthen their credibility in various ways. Sometimes these attempts are counterproductive. Some of them are counterproductive because they reference these historical outbreaks. However, the epistemic injustice comes first.

Narratives about lake Tahoe, Royal Free Hospital or are simply narrative devices employed by patients to attempt to counter the disbelief they experienced before they even know about these things. Narratives about ME/CFS being biomedical are an attempt to counter psychologisation.

Patients are a mirror through which one can see the attitudes of society and the medical establishment towards their health problems. And the article here seems in line with the unhelpful establishment views.

 

[Jonathan Edwards]

Is the author suggesting that historical medical misinterpretations lead to a false narrative about ME/CFS, which patients have adopted, but which doctors generally reject, and that this generates experiences of what patients feel is the injustice of not being believed?

No I think the author is suggesting that if medics shoehorn theories into either 'biomedical' or 'psychosomatic' they end up with distorted views that create genuine epistemic injustice. They are arguing that you need to be biopsychosocial and cover both sides.

But the odd thing about this paper, as ME/CFS Science Blog says, is that it is rather hard to work out what the conclusions are.

To me this smacks of the irony that AI can be a remarkably good simulation of human 'intelligence' in the sense that if simulates all the flaws rather well. I doubt this paper used AI but I think it used the repetition of other people's memes that dominates LLM AI now.

 

[Hoopoe]

They are arguing that you need to be biopsychosocial and cover both sides.

How does the author explain that patients perceive the biopsychosocial approach as aligned with the epistemic injustice they experience?

To me the CBT/GET model is the epistemic injustice. It takes the ugly popular prejudices, changes the language but not the meaning, and elevates them from personal judgments to medical hypothesis and treatment model.

 

[Jonathan Edwards]

How does the author explain that patients perceive the biopsychosocial approach as aligned with the epistemic injustice they experience?

To me the CBT/GET model is the epistemic injustice.

But if you are Paul Garner it is the biomedical model that creates the epistemic injustice.

I agree that the author does not seem to have much experience of what patients experience.

 

[MrMagoo]

I thin the author rightly identifies that ME and CFS were different concepts. One was a concept of an acute epidemic viral illness. The other was a concept of a chronic illness that in Lake Tahoe had been misinterpreted as an epidemic.

But then ME switched to being used as a concept of a chronic illness so that ME and CFS could be applied to the same ill people. Except that in many cases the people using the terms had different ideas about their implied causes.

The author seems to miss the fact that a disease concept is not the same thing as a group of diseased people. And in doing so they have lost touch with the people who matter.

A bit of a boo boo for a medical historian writing a PhD paper on the subject

 

[MrMagoo]

But if you are Paul Garner it is the biomedical model that creates the epistemic injustice.

I agree that the author does not seem to have much experience of what patients experience.

Thankfully, we’re not

 

[rvallee]

No I think the author is suggesting that if medics shoehorn theories into either 'biomedical' or 'psychosomatic' they end up with distorted views that create genuine epistemic injustice. They are arguing that you need to be biopsychosocial and cover both sides.

Which is a ridiculous position, as biopsychosocial is neither of those things. It's an unrelated, independent, one might say orthogonal, construct that mostly consists of questionnaires asking "are you a chicken? how much of a chicken are you? is little chicken afraid? does the little scaredy chicken go buck-buck?"

The most effective argument IMO is to reject the premise of what biopsychosocial means, which is nothing of what it's claimed to mean. It's not a middle ground between the two, in fact it has absolutely nothing to do with either. It includes exactly as much 'bio' as astrology involves astronomy. Which it does, very little of it. And even the psychology is mostly super weird and has to be explicitly dishonest about it, which is usually not tolerated in serious psychology.

In reality, biopsychosocial is entirely irrelevant in medicine. All effective health care simply ignores it, wouldn't even know what to do with it, and psychology is basically only relevant in something like 1% of cases, and only minimally so. "Liaison psychiatry" is the only real attempt at making this, and for the most part attempts at it mostly conclude with some variation of "uh, who is this even for?" and "we don't need to think about that".

To me the CBT/GET model is the epistemic injustice. It takes the ugly popular prejudices, changes the language but not the meaning, and elevates them from personal judgments to medical hypothesis and treatment model.

This is a pretty good description of what biopsychosocial really is. It has nothing to do with health care, with medicine, with biology, physiology, or even psychology. It's just bigotry and the dark side of humanity applied to a serious issue where institutions are failing to uphold their basic principles simply because it's easy to create an industrial-scale chain to amplify this specific human suffering than do something competent about it.

 

[Sean]

Far as I am concerned, however lofty and noble the goals that the BPS movement may have started with, it quickly devolved into an opportunistic excuse generating machine offering pseudo-scientific, pseudo-medical, pseudo-compassionate excuses to the governing political and economic elites and broader society for their shitty inhumane treatment of the less fortunate.

While those responsible for this situation remain in charge of it there is no possibility of reform.