The Madness of Medically Unexplained Symptoms, 2021, Jenny van der Palen

Introduction


Medically Unexplained Symptoms (MUS) are somewhat hidden in plain sight, a ‘central, strangely silent, area of medical practice’. [1] MUS are often talked about alongside contested illnesses, but unlike with MUS, a certain dissent is immediately evident when contested illnesses are discussed.

For example, shortly after I had started working on a thesis about epistemic injustice in relation to MUS, I witnessed a media campaign on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In the campaign, a British psychiatrist claimed that scientists researching treatments for CFS were being silenced or harassed by online activists, that some were ‘leaving the field’ as a result, and that consequently, ‘patients may lose out’.

These online activists were, however, reportedly also patients themselves and their efforts an affront to science, likened to climate change denial and the anti vaccine movement. [2]

Surely, this is ill-conceived patient activism? An act of folly? An unsuspecting reader would be forgiven this impression. I would argue instead that this anecdote is an example of epistemic injustice. In this article, I will outline the way this form of injustice can arise in the doctor-patient dynamic when MUS enter the picture. By the end, I hope to have clarified how this phenomenon relates to the anecdote given here.

Additionally, in the interest of current relevance, I will insert an emerging topic into which this discussion can be extended: doctors with persistent symptoms in the aftermath of the first wave of the raging COVID-19 pandemic.

https://locus.ou.nl/locus-dossier-w...lly-unexplained-symptoms-jenny-van-der-palen/

 

Certainly, the author Jenny van der Palen is not without knowing the situation of ME… :

" Most publicly, patients with ME/CFS – a denomination reflective of dissent – have been maligned for resisting a biopsychosocial framework for their illness in favor of a biomedical one. [26] Historically, long-term post-viral symptoms following viral outbreaks have often been likened to ME/CFS. [27] Its co-optation into psychosomatic medicine, intended to secure scientific credibility for the discipline, turned it from a quintessential post-viral syndrome into a quintessential psychosomatic condition. [28] As a result, patient resistance has been dismissed; for example as ‘bigotry against people with mental illness’. [29]

The express need for psychological support notwithstanding, it is not met due to the preference for corrective therapies within this framework. [30] Evidence of iatrogenic (therapy-induced) harm found with both central treatment options informed by the biopsychosocial model – CBT and graded exercise therapy (GET) – is often not (fully) recognized. [31] This can be partially attributed to a general lack of recognition that behavioral and psychosocial interventions can inflict harm. [32] The problem with exercise is obscured by an emphasis on (nonspecific) fatigue instead of (illness-specific) exertion intolerance.

The incongruent illness narratives have at one point been described as ‘a conceptual deadlock between patients and medical authorities’ and even given rise to ‘militant trope’.

Patients have been accused, typically by leading psychiatrists, of stalking, harassment, and intimidation as well as of abusing the Freedom of Information Act (FOIA). [33] These accusations – ironically at odds with the level of disability associated with the illness – were ruled to be unsubstantiated in a first-tier Tribunal. [34] Furthermore, globally respected health authorities have made a paradigmatic shift towards the patient perspective: ‘what used to be a chasm between patient and professional perspectives has now become a chasm between professionals’. In this sense, ME/CFS is considered a cautionary tale for the psychogenic dismissal of MUS and contested illnesses. [35] "

 

I suspect that quoting Paul Garner may be a 'mistake' - as 'we' know that those are no longer his views, that he has completely disavowed pwME, and has been busy, really quite busy, finding camera crews to film him driving buses backwards and forwards over us.

So...IMO, a mistake to quote him.

 

Is this phrase itself not a good example of epistemic injustice?

If it were used commonly in connection with, say, the fatigue and unwellness that some people experience long after completing their cancer treatment, I might be less suspicious. After all, those are symptoms that are medically unexplained.

But it isn't.

It replaces the word "symptoms" with a loaded term, in order to label, undermine, and discredit selected patients. It categorises them as unreliable witnesses so that they can be disregarded, in the same way that the witness of sex workers or young black men can be disregarded by the law.

 

The JLA (James Lind Alliance) PSP (Priority Setting Partnership) used the acronym MNYES:

"Medically Not Yet Explained Symptoms represent up to 10-30% of presentations in general medicine settings. They can include fatigue, pain, dizziness, irritable bowel syndrome, and functional neurological symptoms.

The focus of research on Medically Not Yet Explained Symptoms is often on particular subsets of symptoms, such as chronic pain, chronic fatigue, irritable bowel syndrome, or dizziness, but it lacks a comprehensive view. This has ramifications for patients who visit different clinics for their various symptoms, without sustained improvement."

The results were pointless because of the members of the Steering Group, but at least the acronym was more truthful.

Fortunately, as AfME had already got the funding they were not able to include ME/CFS in their remit.

I still prefer YUMS (Yet to be Understood Medical Symptoms).

 

I know what you mean, but I still prefer straightforward "symptoms". I'm not convinced we really understand how a lot of symptoms are generated, even those that are supposedly understood.

In many cases, I suspect all "understood" means is that—for instance—a certain type of skin rash is the result of chickenpox infection. Is it important to understand the entire chain of processes by which infection results in those lesions? Not really. It's important to be able to differentiate between chickenpox and other rash-causing things, and that's about it.

The group of symptoms that indicates ME/CFS are fairly clear too. Some of them are hard to describe, especially if the patient hasn't learned a particular vocabulary, so it may take more time to arrive at a diagnosis than it would if they had a nice rash. But you can get there.

The underlying cause of ME/CFS isn't understood, sure, but we know what it looks like and we can call it ME/CFS, just as we can recognise spots on a child's skin and call it chickenpox. By allowing people to put the emphasis on the individual symptoms, we allow them to bundle them up or separate them out to create whatever fictitious categories of illness or not-illness they fancy.

 

I think whatever term we come up with is likely to be hijacked by the medical profession and the BPS brigade, and made in to a euphemism for mental illness. Wessely was quoted saying:

(Simon Wessely - Microbes, Mental illness, the Media and ME: The Construction of Disease. 1994)

He is trying to imply that the name changes keep happening because of the stigma of mental health but what actually happens is that patients are treated as if their symptoms are not real or just a fraction of what they truly are. When patients realize what doctor's really mean when they say "Functional" etc, the name falls of fashion.

It will probably take a change in the law to prevent new names for unexplained illness being corrupted.

 

You know how Roman emperors used to have a slave to utter the words "memento mori" on appropriate occasions.

I wonder whether it would be possible to train ducks to sit on the shoulders of some psychiatrists and quietly say... well, say what it is that ducks say.

 

Yes please! Can I contribute to the crowd funding?

 

Ducktors!