Article: Privilege and Pain: Why the Medical Humanities Matter by Katherine Cheston

[Andy]

Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.​

For two years, from the age of fifteen, every hour of my life was recorded, colour-coded, on an ‘energy chart’. Blue signified sleep and was permitted only from the hours of 10.30pm to 7.30am. Rest was green – and rest meant ‘proper rest’: lying in the dark, thinking of nothing. A quarter of each box on the chart had to be shaded in green: fifteen minutes of each hour of each day. High energy activity – eating, thinking, feeling, talking, bathing – was coloured in red, and was severely rationed: one hour, then two, then three. Low energy activity was yellow. For an activity to qualify as low energy, it had to require just enough concentration to keep me awake, but not too much that I might find it in any way interesting or engaging. Mostly, this consisted of watching films I’d seen so many times before, I could recite them.

I could write, by means of an explanation, that my life was lived according to energy charts because I had ME (or myalgic encephalomyelitis, also known – albeit controversially – as ‘chronic fatigue syndrome’). However, I want to be more specific. My life was lived according to energy charts because, when I became ill after a flu-like virus in September 2008, the clinicians at the NHS Fatigue Clinic I attended believed that children (as well as adults) could cure themselves of their ME by changing their behaviour and their beliefs about their illness. For example, by limiting when and for how long I was allowed to sleep, I was supposed to reverse my insomnia by developing better ‘sleep hygiene’. Over time, I became too ashamed to admit my failure to become more hygienic, and stopped reporting how little I’d been sleeping, the long stretches of blue on the chart a lie covering nights lying awake, so sleep-deprived I hallucinated figures at the foot of my bed.

Full article

 

[Trish]

Interesting article, thoughtfully written and a clear description of just how bad the clinics were, and mostly still are. Thank you @kacheston.

I agree that the medical humanities can, in the hands of someone like you who really listens and has first hand experience, be very helpful. But I think your article glosses over the fact that some of the articles we see from the humanities about ME/CFS are just as dreadful as those from the BPS psychiatrists.

 

[kacheston]

Hi @Andy and @Trish - thanks for your comments on the article!

The piece was addressing those in my field and presenting a positive vision of what the field can be and can do, and the role it should play. There wasn't space to include critiques of previous work here - but rest assured that this is something I've done, continue to do, and am indeed rather infamous for amongst colleagues! E.g., I organised a panel in 2023 for one of the main medical humanities conference, around the 'self-critical' medical humanities, and presented a 20-minute extended critique of Showalter, Shorter, et al - which was really well received! (As an aside, the acknowledgements pages of Wessely et al's books, plus obviously the National Archive documents, present a fascinating/depressing view of key BPS proponents and their involvement with historians, anthropologists, etc - as soon as I get a chance I will write this up!)

 

[Chandelier]

as soon as I get a chance I will write this up!

Awesome, I’m very excited to read about it!
Thank you very much for your work!

 

[Utsikt]

The start of it is brilliant and haunting, but I think it falls through here:

There is a different way to do health research. This is the promise that I see in the medical humanities, and that I have witnessed at Durham University’s Institute for Medical Humanities, as both a doctoral and postdoctoral researcher. The medical humanities offers a new vision for health research, which holds lived experience at the heart of the research process.

What makes this vision so compelling – and, I believe, so urgently necessary – is in its commitment to move beyond assumptions, theories, and belief systems and to ground discovery in what people who live with illnesses experience and express.

This is not new. We’re talking about basic scientific principles which have mostly been completely neglected and often actively worked against (e.g. by creating risk of bias assessment tools specifically for qualitative research that just ignores how inherently unreliable the research always will be). I agree that it’s «urgently necessary» to start doing basic science in these fields as well.

By attending to these experiences, and by making visible and palpable the symptoms and suffering, we can get closer to understanding what a disease might be and how we can better support those who live with it.

I don’t think the humanities are needed for getting an understanding of ME/CFS, and there wouldn’t really be a need for extra support beyond what ill people in general get if the people in charge did their job. So much of the suffering of pwME/CFS is unnecessary and inflicted upon us by others, as described at the start of the article.

So it feels a bit like a tool looking for a job, and not someone trying to determine which tool would be the most appropriate to use. Maybe I’ve misunderstood what’s intended here?

My views here might also be shaped by my general aversion to the lots of the humanities as fields of science. That’s largely due to their determination to inappropriately speculate in causal relationships with frameworks and models galore. This seems to apply more and more to the field of medicine as well, so I’m not holding my breath for the even softer fields to do better any time soon.

(As an aside, the acknowledgements pages of Wessely et al's books, plus obviously the National Archive documents, present a fascinating/depressing view of key BPS proponents and their involvement with historians, anthropologists, etc - as soon as I get a chance I will write this up!)

This on the other hand sounds interesting, and might very well be a worthwhile effort. Factual accounts of past events are always welcome. You’re probably aware of Hunt’s account of the ties between the BPS proponents, politics and commercial actors. Maybe this will complement that.

 

[kacheston]

(Sorry, I can't work out how to quote...)

@Utsikt - I'm up to my eyeballs in an application, so apologies for the short reply! - but:

"I don’t think the humanities are needed for getting an understanding of ME/CFS"

Historians, literary scholars and anthropologists played a central role in supporting the BPS argument. This is evident in the National Archives documents, and in the acknowledgements to key texts. (Like I say, as soon as I get half a chance, I'll write this up and set this out. It's fascinating - and horrifying.) It's as if this 'pure scholarship' (not my term, but a term a colleague used when I explained this to her) was giving some sort of proof, an evidence base, legitimacy for an approach that had... absolutely none.

This is why I think it's important to present a positive view of what fields like the medical humanities can and should do. A call to action for others who are unaware of what is at stake here. It shouldn't be needed - but it is.

I also personally believe that unless changes are made to research cultures, what happened to ME will happen again, to another illness. While biomedicine focuses on solving ME, and providing cures and treatment, other disciplines do have a role to play to ensuring that this 'greatest medical scandal' is learned from, and isn't repeated.

 

[Utsikt]

(Sorry, I can't work out how to quote...)

If you highlight text in a post, you should get an quote option that pops up. You can also click on the +Quote button at the bottom of a post to quote the entire post in one. Then you insert the quotes by clicking on the quotes button at the bottom of the text box where you type your comment. You can split a quote in the text editor into multiple quotes by pressing enter/return when the marker is placed inside the quote.

Alternatively, you can click on reply button at the bottom of a post to have it automatically inserted as a quote in the text editor.

Historians, literary scholars and anthropologists played a central role in supporting the BPS argument.

I agree.

This is why I think it's important to present a positive view of what fields like the medical humanities can and should do.

Wouldn’t that just be for them to stay in their lane and recognise the limitations of their methodologies?

I also personally believe that unless changes are made to research cultures, what happened to ME will happen again, to another illness.

It’s already happening with the pandemic.

other disciplines do have a role to play to ensuring that this 'greatest medical scandal' is learned from, and isn't repeated.

I agree, but that’s different from the «get closer to understanding what a disease might be» from the article.

That’s where I feel like those fields are trying to do things they are not equipped to do, which inevitably results in the spectacular failure we’ve seen with ME/CFS.

 

[Jonathan Edwards]

Historians, literary scholars and anthropologists played a central role in supporting the BPS argument.

I am afraid that I agree with Utsikt!


I can see that this might be of interest to historians and sociologists but I doubt that any medics read any of this to be honest, or that it had any impact on medical practice.

And doesn't this just prove the point that humanities methodology is not appropriate for health care? Health care needs to be based on testing ideas through reliable evidence - the sciences, not the humanities where everything is discourse and opinion. The bit Popper identified as not science.

All experience is 'lived' so the lived bit serves only to distract with humanities jargon I fear. Experience is an essential part of all science (I have even published a paper entitled Proximal Experience as an Essential Part of Physics). In medicine it is enshrined in the process of taking a history. That can be done badly or inadequately but it is taught as bedrock and was always central to my research.

So yes, we need to pay attention to experience, but I wouldn't want to get involved in humanities methodology. There is enough of it already in the endless stream of empty inadequately controlled studies coming out of the BPS stable.

 

[kacheston]

Wouldn’t that just be for them to stay in their lane and recognise the limitations of their methodologies?

I actually think there's huge potential in these methodologies to implement changes in health research cultures - and also to illuminate what illnesses, like ME, actually feel like. Current descriptions (e.g., 'debilitating fatigue') don't come close, I think. Ditto to addressing the social forces that prove barriers to progress - e.g., the 'low awareness' of the need for research into ME, identified in the Delivery Plan.

I'm really sorry, I'm not able to engage as I'd like at the moment as deadlines are looming and workloads overwhelming.

 

[kacheston]

I can see that this might be of interest to historians and sociologists but I doubt that any medics read any of this to be honest, or that it had any impact on medical practice.

I'm referring here to the policy documents at the National Archives, in which humanities and social science researchers feature (at times prominently). Personally I think the impact on UK policy could well have been significant, at a high level.

"Health care needs to be based on testing ideas through reliable evidence - the sciences, not the humanities where everything is discourse and opinion."

Yes, but much BPS "science" (and we all know that Wessely, Sharpe et al mobilised their stories - very explicitly, including in the press - as 'science' and themselves as 'scientists') calls this into question. I see huge potential in humanities and social science methodologies in critiquing these practices, and the social forces that shape them.

 

[Jonathan Edwards]

Yes, but much BPS "science" (and we all know that Wessely, Sharpe et al mobilised their stories - very explicitly, including in the press - as 'science' and themselves as 'scientists') calls this into question. I see huge potential in humanities and social science methodologies in critiquing these practices, and the social forces that shape them.

I don't really see how it calls anything into question. It is just that these people tried to get away with very badly done science - where the results were not reliable. Science is still the practice of basing knowledge on reliably tested ideas. The critique of the practices involves pointing out flaws in trial design, which is rigorous scientific methodology and which we have done. I am not sure what more there is to say?

As for the social forces shaping them, that seems to me to be pure speculation that we will never be able to form useful testable theories about. The overriding problem is probably just that doctors follow popular prejudice in thinking that if the patient's arms and legs work OK there is nothing wrong with them. Various individuals have exploited the situation for personal career advancement but we will never know whether that was the cause or the effect of a general trend. You cannot actually do experiments on such things so no reliable evidence will ever be extracted.

To me the most important factor to overcome is the pervasive ignorance about hard medical science - in the public, journalism and almost as much amongst medical professionals. Studying experience doesn't address that. You need to understand cause and effect and experience doesn't reliably give us that - only effect.

 

[Utsikt]

I actually think there's huge potential in these methodologies to implement changes in health research cultures

I’m very curious about how that would actually happen - why would a medical researcher listen to a historian about how they should do research? Semmelweis was ignored by his peers for decades, I don’t see how non-peers would stand a better chance today.

- and also to illuminate what illnesses, like ME, actually feel like. Current descriptions (e.g., 'debilitating fatigue') don't come close, I think.

I agree that this is an issue, but I also don’t see how non-pwME/CFS could contribute much here, e.g. as illustrated by the seriously flawed PEM questionnaire discussed e.g. here and here.

Ditto to addressing the social forces that prove barriers to progress - e.g., the 'low awareness' of the need for research into ME, identified in the Delivery Plan.

This is where we might disagree in our analysis of root causes. In my opinion, it’s the active work against a factual understanding of ME/CFS that is the main cause of lack of research, in combination with how convenient the BPS narrative is for the people in charge and the people with money.

I'm really sorry, I'm not able to engage as I'd like at the moment as deadlines are looming and workloads overwhelming.

No worries - I don’t envy that part of the academics! Please don’t feel an obligation to respond right away, one of the benefits of the forum is that different conversations can move at their own pace independently of each
other.

 

[bobbler]

Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.​

For two years, from the age of fifteen, every hour of my life was recorded, colour-coded, on an ‘energy chart’. Blue signified sleep and was permitted only from the hours of 10.30pm to 7.30am. Rest was green – and rest meant ‘proper rest’: lying in the dark, thinking of nothing. A quarter of each box on the chart had to be shaded in green: fifteen minutes of each hour of each day. High energy activity – eating, thinking, feeling, talking, bathing – was coloured in red, and was severely rationed: one hour, then two, then three. Low energy activity was yellow. For an activity to qualify as low energy, it had to require just enough concentration to keep me awake, but not too much that I might find it in any way interesting or engaging. Mostly, this consisted of watching films I’d seen so many times before, I could recite them.

I could write, by means of an explanation, that my life was lived according to energy charts because I had ME (or myalgic encephalomyelitis, also known – albeit controversially – as ‘chronic fatigue syndrome’). However, I want to be more specific. My life was lived according to energy charts because, when I became ill after a flu-like virus in September 2008, the clinicians at the NHS Fatigue Clinic I attended believed that children (as well as adults) could cure themselves of their ME by changing their behaviour and their beliefs about their illness. For example, by limiting when and for how long I was allowed to sleep, I was supposed to reverse my insomnia by developing better ‘sleep hygiene’. Over time, I became too ashamed to admit my failure to become more hygienic, and stopped reporting how little I’d been sleeping, the long stretches of blue on the chart a lie covering nights lying awake, so sleep-deprived I hallucinated figures at the foot of my bed.

Full article

I have no words to say on how important this is and how well-written to hopefully get across to some non-ME readers the extent of this awful ‘situation’ (misery of a ‘this us your space’) pwme are seen as ‘deserving’ by ‘well-intentioned’ (it doesn’t take much empathy + much time to step back and imagine what it’s like living what they suggest) micro-managing of a human being and seeing autonomy as unnecessary.

And the worst bit being that it’s so ongoing and made to feel we will never escape it because of callous (that’s what choosing not to look or open eyes to the impact of what you do is) indifference to whether it even works whilst justifying the hell of behavioural management by claims ‘it must [work] … because that’s what they (based only on their own individual made up judgments of others) think is behaving right’ . So the hygiene word point and the way it is made is so very poignant and accurate to the coercive attitude of the types doing it (pulling faces at people as if they are dirty simply because they themselves choose not to do the work to be curious mentally/scientufically/humanly and even try and employ intelligence instead).

And yes this is important, ( watching the Guiffre news of her book reminds me of this, if that’s allowed as a comment) because for some of us there might be little good we can get back or experience on the future and things won’t end well but the bigger insult on top of that is the idea that those who were part of unnecessarily making life excruciating, much less of anything and more callous than it ever needed to be, getting to rewrite the whole truth and who we are to keep on lying to themselves. To be silenced or our voice dismissed and ignored on top of all that is the most violating thing of all but it also is behind why it’s still getting away with the con that it’s ‘help’ and/or deserved not some cruel tyranny people are being put through.

To see someone not sanitize its impact but write it in a way that isn’t dramatic so people might actually want to read and some might ‘put themselves in the shoes’ is powerful. I hope it begins a wake up call so some get that this which seems to get accepted like some norm realise it’s not ok and is obviously pretty harmful to leave someone subjected to endlessly.

 

[bobbler]

I don't really see how it calls anything into question. It is just that these people tried to get away with very badly done science - where the results were not reliable. Science is still the practice of basing knowledge on reliably tested ideas. The critique of the practices involves pointing out flaws in trial design, which is rigorous scientific methodology and which we have done. I am not sure what more there is to say?

As for the social forces shaping them, that seems to me to be pure speculation that we will never be able to form useful testable theories about. The overriding problem is probably just that doctors follow popular prejudice in thinking that if the patient's arms and legs work OK there is nothing wrong with them. Various individuals have exploited the situation for personal career advancement but we will never know whether that was the cause or the effect of a general trend. You cannot actually do experiments on such things so no reliable evidence will ever be extracted.

To me the most important factor to overcome is the pervasive ignorance about hard medical science - in the public, journalism and almost as much amongst medical professionals. Studying experience doesn't address that. You need to understand cause and effect and experience doesn't reliably give us that - only effect.

I agree

But I also think we have been stuck with the ‘what’s the problem it’s just a bit of CBT and people being supportive’ type attitude from those who won’t hear it’s any more than being tired which they all get too.

It’s getting past the ‘so what factor’ that I think we come up against where people won’t listen to how bad it actually is because they are so sure they already know and want to keep thinking we don’t have it that bad so have all incentive not to listen.


But I agree on the bad side of every coin issue re research that has more subjective rules.

But I also think of how it was things like Goffman that transposed readers to actually see worlds in such ways they couldn’t wiggle out of seeing the reality (most self justify and see different things as cognitive dissonance gets in the way) and played a part in moving on ethics and people thinking of what they were actually doing (consequences wise ie what they were building that someone had to live) instead of ‘just’ talking about intentions or why of each building block without realising what the whole thing became if you were on the receiving end of it. And all the maintenance factors (power and group psychology, keeping/getting job done) that built up as happens in systems.