(Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

[Trish]

Thank you for explaining more about your research, @kacheston. I appreciate you engaging with us.

I agree with Jonathan Edwards' responses.

I don't think wrong treatment and neglect by clinicians has induced shame feelings for me. But it certainly induced all sorts of other negative feelings - rejection, anger, puzzlement, disappointment, sadness at losses stemming from being ill and from the complete lack of medical support etc.

If researching shsme is your specialism, I wonder whether a future project might focus on the lack of shame shown, and presumably felt, by the clinicians, journalists, head of the Science Media Centre, and others who have direct and indirect power and influence over the health and welfare of pwME - their lack of shame about the harmful treatments, about going on pushing them to protect their reputations, and their attitude and behaviour towards us, including public characterisation of us as violent militants.

Some really challenging questions for those people who have so failed pwME and continue to misuse their power and influence might provide some useful insight into what motivates them.

 

[kacheston]

It is actually quite simple, I think. I worked amongst people interested in the MUS dustbin all my life. I didn't get involved because there were no leads that looked as if one could make progress on. The problem looked too difficult. So the field was taken over by empty vessels making noise.

I have come to a similar conclusion, through different avenues - and my question would be: how do we stop the empty vessels? How do we silence them, or talk over them? If the problem looks too difficult, then shouldn't we at least try to change the system?

I don't think that researching shame is just paternalism - at least, not in the case of my particular approach. (Through looking not at feelings of shame - how it feels to live under shame - but at its causes, where it comes from, and why.) If I did, I'd have stopped all of this a long time ago... because I can absolutely confirm that this is very hard to write up!

 

[kacheston]

Thank you for explaining more about your research, @kacheston. I appreciate you engaging with us.

I agree with Jonathan Edwards' responses.

I don't think wrong treatment and neglect by clinicians has induced shame feelings for me. But it certainly induced all sorts of other negative feelings - rejection, anger, puzzlement, disappointment, sadness at losses stemming from being ill and from the complete lack of medical support etc.

If researching shsme is your specialism, I wonder whether a future project might focus on the lack of shame shown, and presumably felt, by the clinicians, journalists, head of the Science Media Centre, and others who have direct and indirect power and influence over the health and welfare of pwME - their lack of shame about the harmful treatments, about going on pushing them to protect their reputations, and their attitude and behaviour towards us, including public characterisation of us as violent militants.

Some really challenging questions for those people who have so failed pwME and continue to misuse their power and influence might provide some useful insight into what motivates them.

Thanks for your comment, Trish, and excellent points.

I hope that much of what you say can come out in this research; the conclusion currently turns the shame question on the academic community, asking why aren't we (as academics) deeply ashamed? Why have we allowed this to continue for so long - and continued to profit from it? (Challenging questions indeed - and ones which I am sure will not be welcome, especially from someone so junior!) My feeling is that much of this stems from academia/universities as institutions - funding, giving ethical approval to, promoting key proponents who have created these narratives - although I do agree that questions must be asked of other institutions too (e.g. SMC - as it stands my thesis critiques the SMC/Fiona Fox directly). I'm very interested in such a future project, should my conclusions/questions not make me so unfundable...

 

[Jonathan Edwards]

I have come to a similar conclusion, through different avenues - and my question would be: how do we stop the empty vessels? How do we silence them, or talk over them? If the problem looks too difficult, then shouldn't we at least try to change the system?

I often wonder that.
Discussion of politics unrelated to ME is forbidden here but one could ask the question on a wider front this week!
But sometimes we can muffle some of the louder clanging and, yes, it is always worth trying.

 

[Jonathan Edwards]

I'm very interested in such a future project, should my conclusions/questions not make me so unfundable...

And if you really believe in getting things right you can get more done than anyone else much despite being unfundable, if my own experience is anything to go by! So don't give up.

 

[kacheston]

I often wonder that.
Discussion of politics unrelated to ME is forbidden here but one could ask the question on a wider front this week!
But sometimes we can muffle some of the louder clanging and, yes, it is always worth trying.

Absolutely!
It seems to me that all of this reveals something really rotten at the heart of the way we do research. That's really what I'm trying to change - in some small way, at least!

 

[Peter T]

Sorry to resurrect this thread - I’ve only just come across it, while doing the final edits on the paper that came out of this workshop. (Also apologies in that I've forgotten - again! - how to reply to someone on here so that they might see this - I hoped clicking 'reply' would work!)

I just wanted to apologise for the way my research came across here - this wasn’t at all what I intended, and I'm really sorry about this. I hoped I could clarify a few points:

The reason that I am particularly interested in shame is because I want to look at how people with so-called “medically unexplained symptoms” are harmed. (My background is in the humanities and social sciences, so I’m looking at emotional harms - which, of course, occur in addition to physical harms.) There’s a lot of interest at the moment in shame - lots of people are researching the impact of living under shame, stigma, and how painful this can be: how it can lead to poorer health outcomes, for example. So my primary interest isn’t on the emotion of shame (how it feels to be ashamed) - I'm most interested in how shame comes about, how it’s created (and who is creating it, and why). Really, I’m more interested in *shaming* and stigmatisation.

Essentially I believe that the category of “medically unexplained symptoms” is harmful, and that many of the narratives created around this concept shame and stigmatise those who have to live under these labels. The shame is created by external forces - I don’t believe that there is anything inherently shameful about living with ME or any other condition that some describe as "medically unexplained", and I don’t believe that people with these conditions should feel ashamed. I would, however, argue that arguments (such as by BPS proponents, academics, clinicians) shame patients, and therefore cause them harm. This is not an angle that has been explored before - so, as we know, certain academics can go to the press, claim to have been the victim of vicious / vexatious online attacks, play the victim, etc - because (they say) how can this sort of science cause harm?! Aside, of course, from the physical harm (caused e.g. by GET), I want to also suggest that shaming and stigmatising narratives cause harm in other ways - shaming patients is just one of these. Academia is obsessed with ‘impact’ - academics love to talk about the impact of their work, as if this impact can only be positive. I hope to point out how and why this is wrong.

I really hope that makes sense - please get in touch if it doesn’t, and if you would like to discuss any of this any further. Feel free to ask any questions below, or to get in touch via Twitter (@kacheston) where my DMs are open. Also happy to provide an email address via some sort of direct message, if this is easier!

That being said - there's no need to reply! I just couldn't click away from this without writing an explanation (or at least, trying to!) for a hastily-written abstract. (Needless to say, I no longer use this phrasing!)

Sorry, I am struggling to respond this evening, but I do want to say, @kacheston that I value you engaging here on this issue

 

[JemPD]

Hi @kacheston you quoted me but there wasnt any text in the quote box... but i linked through to my post and noticed i was pretty riled up when i wrote it! lol

I'm not well enough at the moment to re-engage properly - i have only a vague recollection of the discussion/paper itself & not up to re-reading at the moment. I have read your recent posts though & i must say i really apprecaite your attitude towards all this, and your willingness to come here & discuss your work.

I agree with @Trish & @Jonathan Edwards

As i said, im sadly not really up to saying much more, but a couple of things occur to me....
i loathe shaming - as, it appears, do you.
I get really angry when people suggest i should be ashamed of something bad that has happened to me. Their are few things worse than victim shaming.

It seems to me that people shame others because they are attempting to avoid their own shame. eg 'i feel ashamed of what i have done to you/cannot do for you, therefore I will shame you for it, in order to transfer responsibility from me to you.
Shame i think is profoundly connected to responsibility.

Anyway i hope i'll be well enough to discuss with you more in the future, as its a subject i feel strongly about, but for now i wish you well with it all.

 

[bobbler]

Edit, cross posted with @Keela Too who said it rather more politely lol

err, excuse me, but you're doing it too.

Change your beliefs from Medically Unexplained Symptoms, to Epistomologically Lacking Medics, and you'll solve the entire problem.

Yes. There was another thread somewhere that I was noting the issue seems to be a lack of education in the sector with regards research. We had drilled into us things like phenomenology vs grounded theory and ontology vs epistemology. These guys think 'they know' when just as 'the message is the medium' they fail to be precise and nuanced (which is what puzzles me in their conclusion section that they are not required to say exactly what they actually found, and what it isn't by quoting exact terms) in what 'they've found' because they take it from their 'intention' rather than 'what they actually measured or studied'.

So the fact some of this is mentioned in the quotes above might be good, but difficult if it isn't driving deeply enough into the issue being the utter contradiction between the 'whole MUS' thing and these terms - there is no 'add-on' that can make the attitude driving what people get and are seen as OK, it is the BPS approach in itself.

But as we know it seems to be an area that doesn't read through and weight papers by the robustness of their methodology in answering a question, but there seems to be a skew to clinical trial style design with the mechanism and aspects around an issue rarely being studied rather than seen as a gap to be filled by pseudophilosophy/theory built only on theory. I find that quite strange for an established area.

Nothing makes me more angry then them comparing themselves to Oliver Sacks (then writing third person), from the work I read from him the only way he could have got such fine-grained detail in order to crack the headway he managed to make was by v. good interview techniques and investigation that often focused on what patients reported happened (noting that this was more insightful than what an outsider 'saw' and assumed was going on).

That is empathy in the real sense - it isn't fake sympathy whilst not hearing someone. The best analogy for the embarrassing level of missing the point is male-heavy physics departments thinking to recruit more women they should paint their reception area pink. And I think it is a major, major issue in psychiatry and the areas that have taken their lead from it, probably the medical profession in many areas.

They've red-herringed themselves, because they instead use constructivism, that these terms are about 'patient emotions' or 'add ons' to minimise the importance of the part they can't do - when they actually are foundation building blocks of the very knowledge they believe gives them such superiority.

How you fix an issue when the problems have psychologically put themselves in such a place? And yes it is shocking breakdown of the human understanding that actions--> consequences/reaction causation model to the point that they are laughably sticking a label of this cloth-eared nature ('we aren't going to bother investigating bucket') onto people and expecting a few lies and manipulations can make it 'respectful'. It's like if a bank refused to serve someone 'because they are a woman so wouldn't understand' whilst using the phrase 'calm down dear'. Claiming the issue 'is the patients' reaction', that you don't need to fix the action and attitude just add a few fops to make it pretend polite would be even more passive-aggressive.

 

[JemPD]

lol its a topic that gets me so riled up i am spending energy i shouldnt on it! but i read the bit i quoted in my original post again....

I will argue that this disrespect compounds their suffering by provoking a uniquely intense sense of shame that is often perceived to be more distressing than the symptoms themselves.

Just going to edit that statement from my own POV...

"I will argue that this disrespect compounds their suffering by requiring a huge amount of energy to resist the uniquely intense sense of shame that is being wrongly projected onto them, and the pain of being shamed for something they are not responsible for is often perceived to be more distressing than the symptoms themselves."

(i think its that projection that you're trying to highlight/fight against @kacheston? ?? if so then the nuance is important & needs to be made clear, because me feeling ashamed, and having shame projected onto me are very different - they're are 'chalk n cheese', to me anyway)

I just have to go rest now, so if i dont come back any time soon

 

[rvallee]

I have come to a similar conclusion, through different avenues - and my question would be: how do we stop the empty vessels? How do we silence them, or talk over them? If the problem looks too difficult, then shouldn't we at least try to change the system?

There are many reasons, but they mostly add up to the same two: incentives and accountability. Simply put, there are no incentives to make any progress on most chronic health issues because there is no accountability for failure, in large part because the people failing decide whether they fail or not, they are judge, jury and prosecution.

For odd reasons, medicine doesn't seem too concerned with illness, only disease. We can see it in the general message over the cycle of infections in Covid: mass illness is fine as long as hospitals are able to take care of the most severe cases and save lives. People being mildly ill is of no concern since mild illness is believed to be harmless in all cases (nevermind examples like AIDS, whereas HIV is usually an initial "mild" flu-like illness). For sure they'd want to prevent and avoid it, but not at the cost of healthy people getting out and having fun. Illness is just normal and not a concern, it's usually not even recorded (lots of pressure to end all testing derives from that).

Ultimately, modern healthcare is like modern society at the pre-democratic stage: taxation without representation. Patients have all the stakes, none of the influence, while the people pushing the same failed ideas have no stakes and all the influence. And those decisions are happening in secret, behind closed doors. Sometimes we can get involved and steer things right, but usually when we're discussed and aren't at the table, it's bad for us, often extremely bad.

The only transparency in medicine is over outcomes. Things have progressed generally because failure is often plain and obvious in most cases, it's simply not possible to call failure a success, if someone dies, they're dead, not disputable. In our case, the complete lack of progress in this area is generally considered massively successful, because outcomes are disputed. Illness, unlike disease, is disputable.

So in our case, the medical system is a lot like an office of financial investors whose evaluation is completely detached from their performance, they could lose 100% of every investment they make and still get full bonuses, since it's their own self-evaluation that counts in the end. It's not hard to see failure as an outcome of this. That office would perform extremely poorly, except everyone working in it would think it's great: bonuses, pay raises and promotions for everyone!

It's nothing unique or special to medicine, any system would fail in those conditions, but the circumstances of healthcare align to make this a completely unique failure in any profession, because although I can devise an example of investors losing every investment they make and still get full bonuses, in real life this doesn't work, because losing enough money destroys the whole business.

Meanwhile failing at this is basically an industry in its own right. When people succeed out of failure, they'll keep on failing and succeeding at the same time. They'll succeed personally and fail at what they are supposed to do. But if they succeed personally, and professionally, how could they think it's wrong when they are so richly rewarded and awarded?

 

[Esther12]

Just want to add thanks to @kacheston for joining and discussing their work.

Discussing these sorts of things can be complicated and it's easy for people to misinterpret things. I think people from different cultural and religious backgrounds can have very different understandings of shame.

I see how some approaches to MUS can be said to encourage a sense of shame, but it feels really difficult to explain what I mean by that! Approaches to ill health and disability (or just views about what 'respectable' people should do) can create a sense of shame amongst those with lots of health problems, but there are particular issues around MUS and the way some doctors treat them.

 

[bobbler]

Academia is obsessed with ‘impact’ - academics love to talk about the impact of their work, as if this impact can only be positive. I hope to point out how and why this is wrong.

I've cut down to just this quote because I LOVE it as a point to be made.

You've also made me think - why is an impact section (given it is now the one most commonly read and picked up by marketers, journos etc, and has its own weighting re: funding and credit in the workplace) given free-rein methodology-wise to seemingly be a riff on 'what could this mean' when the rest of the paper is supposed to have science and purpose in it? Why do they not actually have criteria for someone having to ascertain their 'impact' and prove their claims or note they are indeed just riffs from their own views - for this bunch and their preference for surveys cheap and quick as they are there is no excuse?

If the research is as you've suggested above, and in the quotes I've seen posted in another trail then it seems positive and a much-needed beginning. MUS (and other dodgy acronyms) seems to me to be basically the medical system actively systematising what others would have described decades ago as 'fob off attitude of some to certain demographics' - then taking it to a new level. Which creating a stigma that has caused untold harm beyond even just medical access.

And yes I agree that ME has been an incredibly debilitating illness, the poor treatment (including not imposing proper weight behind adjustments etc) has been what is directly responsible for wrecking my life and my body wholly unnecessarily. Without it I guess I'd be mild, have much better qualifications a career and a family because I could have had adjustments from all the things that caused every significant deterioration. I wouldn't have had all support removed and turned into hatred towards me.


The impact of the BPS inc. stigma they created and all those effects needs to be quantified so these things can stop being OK'd and then worse the past being forgotten and those who did it being able to belittle the consequences and severity of what they did. EDIT*: I personally go so far as to think biopsychosocial as it is these days from the usual suspects is actually plain bigotry and stigma creation hidden ie it is an ism or an 'ogyny' using an ambiguous term and weasel words acting as a switch and bait - they list all the things that contribute then do nothing to help and blame the patient for 'letting them happen' labelling to reduce their voice in the process. I would appreciate someone going through the impact of the 'BPS' and then writing 'what does a deliberate stigma-creating campaign/policy look like' so that the two can be 'compared' ie that can be proven, as it is stigma-spreading charading as 'helpful therapy/ideology' at the moment.

I'd personally like how much they have unnecessarily cost individuals and the economy quantified and estimated. So it serves as a warning to the next generation claiming to 'save money'. My daily life has been one of decisions bartering short-term vs long-term survival constantly with no 'good option' ever left on the table. This I was thrust into by others' 'best short term interests' being put before any of mine, and maintaining ignorance of and disowning responsibility for the much worse (in 'is the pro worth the con') long-term consequences are key to this being able to happen.

That's not impossible if you take a similar illness debility-wise that is treated very differently and just cross-fill vs the ME/CFS outcomes for those below retirement age at onset? I'm sure there are other proxies too for quantifying other harms or same harms from different angles (e.g. pull out and example the cost of individual events individuals note where an adjustment would have been a 'sliding doors moment') - if you triangulate on a diagram then it would surely be more robust/reliable than any research they've done to the contrary?

 

[lunarainbows]

Well, I definitely did feel a sense of shame when being told I had MUS. Going through the CBT trial, reading the booklet, makes you think you’re the one making yourself ill - or keeping yourself ill. So you have to try harder. i felt I had to walk more, I was told it’s a software problem after all, not *actually* something wrong with me. So I felt ashamed at still being ill, and not being able to do & be better like everyone else. And the more doctors said horrible things over the years, the more ashamed I felt. I would have thought many people with MUS would have experienced similar things? The shame in fact is one thing that I find very hard to leave behind, I still feel it.

 

[NelliePledge]

I don't think wrong treatment and neglect by clinicians has induced shame feelings for me. But it certainly induced all sorts of other negative feelings - rejection, anger, puzzlement, disappointment, sadness at losses stemming from being ill and from the complete lack of medical support etc.

This sums it up for me.

My earlier comment on the thread was not shamed just fuming

I’m remembering particularly the way I was dealt with by GPs when I was trying to understand what was wrong, what illness I had, the laughing and eye rolling when I said a friend with Fibromyalgia had suggested I might have that but one of my main symptoms was sore throat. Ha ha you don’t get sore throat with that. Then at a subsequent appointment I asked about CFS because I had googled fibromyalgia and sore throat and that time was told oh we don’t like to give that diagnosis it’s better to treat the symptoms. At no point I felt shamed I felt angry by their behaviour so much I changed to another GP surgery. But what strikes me following this discussion is yes those GPS were, possibly subconsciously, behaving in a belittling or shaming way.

What may also be relevant in terms of my reaction was that at the time this happened to me I was around 50 had a decades long career and owned my own home and car, also my ME was disabling but relatively mild. I had a couple of supportive friends too. So I was in a position where I had enough energy,the confidence and experience and support to feel able to stand up for myself.

 

[Trish]

Well, I definitely did feel a sense of shame when being told I had MUS. Going through the CBT trial, reading the booklet, makes you think you’re the one making yourself ill - or keeping yourself ill. So you have to try harder. i felt I had to walk more, I was told it’s a software problem after all, not *actually* something wrong with me. So I felt ashamed at still being ill, and not being able to do & be better like everyone else. And the more doctors said horrible things over the years, the more ashamed I felt. I would have thought many people with MUS would have experienced similar things? The shame in fact is one thing that I find very hard to leave behind, I still feel it.

It's so sad and angry-making that you and thousands of others were put through such an appalling travesty of treatment.

I guess my lack of feeling shame is because I wasn't subjected to that so overtly. Just the continual drip drip of GP's all telling me to try to get more exercise which made me physically sicker, but didn't scar me so directly psychologically.

Reading the stories of victims of the Lightning Process demonstrates starkly the damage done both mentally and physically to pwME when told lies about the cause of illness and that we can cure ourselves with positive thinking and exercise. I think the version of CBT inflicted on Luna and others is just as bad.

Even my local ME service that claims its treatment is based on pacing is still, as far as I can make out, gearing all its service to focus on 'recovery', and keeping on trying to add in extra activity every week, giving the impression that recovery is in our hands.

 

[Andy]

I would put forward an argument that whether or not someone feels shame can depend on how reliant they are on the opinions of others, which would often correlate to how old they are. So children and young adults are far more vulnerable to take the word of so-called experts at face value, and therefore to taking on board the message that, in essence, they are to blame for the symptoms they are experiencing.

 

[Hutan]

I think you are right @Andy, but I wouldn't want anyone to feel shame for feeling shame. I think there are quite a lot of factors, including the exposure to gaslighting (or instead to good information) and the extent of reliance on others for practical support. I think everyone is concerned, to some extent, about the opinions of others - it's part of being human.

 

[Hoopoe]

Well, I definitely did feel a sense of shame when being told I had MUS. Going through the CBT trial, reading the booklet, makes you think you’re the one making yourself ill - or keeping yourself ill. So you have to try harder. i felt I had to walk more, I was told it’s a software problem after all, not *actually* something wrong with me. So I felt ashamed at still being ill, and not being able to do & be better like everyone else. And the more doctors said horrible things over the years, the more ashamed I felt. I would have thought many people with MUS would have experienced similar things? The shame in fact is one thing that I find very hard to leave behind, I still feel it.

It was similar for me. I didn't have as much contact with the healthcare system early on due to a slow and insidious illness onset but still received the mistreatment by family members (two of which are doctors) and teachers.

The MUS and CBT model of ME is just the same dumb prejudice carried by random people in the street, with slightly different language.

The message was that it was essentially a personality problem of not trying hard enough, and I accepted this message and honestly tried to become a better person and overcome my "flaws" but it only destroyed me physically and psychologically over a few years with constant relapses and increasing despair and self-blame with every relapse.

 

[Arnie Pye]

My father despised sick people, and thought they were just lazy and were trying to get out of school or work. If there was visible evidence of illness e.g. a rash in a child who also had a fever which could be seen on a thermometer he would grudgingly accept it. But he was keen to get the sick person out of bed and back to being "normal" whether they were ready for it or not.

He was also someone who used the "If you don't stop crying I'll give you something to cry about" threat (which he would sometimes act on). So, I can remember being young (either pre-school age or in my early years at school), falling over and hurting my knee or my head or whatever, and knowing that sympathy and empathy would not be forthcoming (although I wouldn't have known those words then).

If "You've Been Framed" had been on TV when I was a child my dad would have loved it.

I learned to feel ashamed of being ill or in pain as a result, and despite now being over 60 I still do. I feel ashamed when I see doctors for anything invisible, and I never expect to be believed. I now treat as many of my own health problems as I can.