"Shame, Psychology and ME": slides for presentation by Cheston, Richard; Cheston, Katharine

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https://uwe-repository.worktribe.com/output/13780159

Shame, Psychology and ME
Cheston, Richard; Cheston, Katharine

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Professor of Dementia Research Richard Cheston Richard.Cheston@uwe.ac.uk
Professor in Mental Health (Dementia Care)

Katharine Cheston



Abstract

In 2008, when she was 15, Katharine Cheston became ill with Myalgic Encephalomyelitis or ME. Over the next decade and more Katharine, and ourselves as a family, encountered many different psychological ideas and therapies, often being offered by non-psychologists. One such belief system involves the constuction of ME as a psychiatric illness that is perpetuated by false illness beliefs and the avoidance of exercise.

This session is a personal reflection on this process, the role that shame played in our lives and the wider dearth of appropriate services for people with ME.

Presentation Conference Type Presentation / Talk
Conference Name Psychological Sciences Research Group meeting
Start Date Feb 20, 2025
End Date Feb 20, 2025
Deposit Date Feb 20, 2025
Publicly Available Date Feb 25, 2025
Peer Reviewed Not Peer Reviewed
Keywords ME, Shame, Graded exercise therapy, CFS, CBT
Public URL https://uwe-repository.worktribe.com/output/13780159
This output contributes to the following UN Sustainable Development Goals:


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CHSS School of Social Sciences
Centre for Health and Clinical Research

• Psychological Sciences Research Group

Health and wellbeing

 

[Hutan]

Slide 11

•Sees locum paediatrician in specialist service (red activity now 4.5 hours/day and at school 2 hours/day)

•“Katharine’s worries are using up a lot of her energy and I have explained that worries can cause fatigue too. Katharine told me today that she didn’t think she was worrying. I have explained that unless we help her with her worries, it is hard to make progress with symptoms of chronic fatigue syndrome … I have given her several leaflets about emotions and feelings. I think she would benefit from cognitive behaviour therapy.”

•Wants Katharine to be referred to CAMHS for CBT. States that if we don’t do this, then she won’t get better.

•Implies we may be referred to social services if we refuse.

Slide 12

Katharine's memory of this
“Becoming so unwell, so suddenly is a frightening and anxiety-inducing experience. I’d gone from being totally healthy, loving school, with a great social life and groups of friends - doing lots of extracurricular activities including high-impact sports - to, within a matter of months, being unable to get off the sofa, go to school, go to judo, collapsing in whole-school mass … and feeling utterly awful and having absolutely no idea what was wrong with me (and having lots of blood tests, an ultrasound of my heart and an MRI of my head).

All of this would be scary for an adult, let alone a 15-year old! But the locum paediatrician couldn’t see any of this - she couldn’t see a 15 year old who’s going through a life-changing experience and who was suffering. She was blinded by her own beliefs: my ’worries’ became pathological - they were causing my symptoms, not being caused by them. She was totally unprepared to listen to alternative explanations - that I wasn’t worrying unduly, and that I really was ill”

 

[Utsikt]

Unfortunately, that resonates well with my experience. I’ve gone to great lengths to try and explain to my GP that my thoughts and emotions are reasonable and proportional, and that they do not cause my symptoms. The trauma of being treated as someone who doesn’t know themselves and their own thoughts is still haunting me today.

Luckily, I have a fantastic therapist that was able to write them a letter the very clearly stated that my head is more than fine.

I can’t imagine going through that at 15. it would have completely broken me and scarred me for life. I feel so sorry for her and everyone that has experienced the same. And I’m glad that it seems like her parents understand.

 

[Hutan]

slide 19

The CBT model of ME and our experiences

•The two consultants who saw Katharine (and probably some of those who saw Maeve Boothby O’Neil) framed ME as an illness in which maladaptive thoughts (worries, catastrophic beliefs about hyperventilation) lead to avoidance and other dysfunctional behaviours

•We have also encountered them amongst our colleagues - “Katharine will get better when she wants to”

•However, we saw no evidence that Katharine experienced catastrophic deconditioning. In addition to post-exertional fatigue she had many other symptoms which couldn't be accounted for by worrying (which anyway occurred as a consequence of the ME)

•More generally, if recovery involves adjusting dysfunctional beliefs and behaviours and reversing the deconditioning, then this places those who do not make progress in a precarious psychological position.

•You either get better (the model works) or you blame yourself (because the model cannot be wrong) – questioning self, self-blame and shame.

This illustrates the issue of psychological harm, which I believe is often overlooked. From the summary of the Cochrane protocol for the new (and now abandoned) Exercise Therapy for ME/CFS review, the consideration of harm appears to be only of physical harm, related to PEM. But, if the benefit of GET is a poorly evidenced 'zero to less than clinically significant', then the substantial risk of psychological harm (which can manifest as suicidal ideation) surely outweighs that questionable benefit.

 

[Hutan]

Also covers the accusations of ME/CFS advocates being anti-psychiatry and militants who are driving researchers from the field.

Mentions Katharine's PhD work:

Shamed and stigmatized: narratives of complex, poorly-understood illness (Cheston, K., 2024)

•Focus on the additional burden that CBM places on people with ME

•What are the consequences of these beliefs for those who live with illnesses for which a medical explanation has not (yet) been identified?

•Thesis examined how women living with ‘medically unexplained symptoms’ are stigmatised. They endure a dual burden of suffering: symptoms and shame.

•Articles in Journal of Medical Humanities, Journal of Evaluation in Clinical Practice, Literature and Medicine.

 

[Utsikt]

slide 19


This illustrates the issue of psychological harm, which I believe is often overlooked. From the summary of the Cochrane protocol for the new (and now abandoned) Exercise Therapy for ME/CFS review, the consideration of harm appears to be only of physical harm, related to PEM. But, if the benefit of GET is a poorly evidenced 'zero to less than clinically significant', then the substantial risk of psychological harm (which can manifest as suicidal ideation) surely outweighs that questionable benefit.

You should probably report this in their feedback survey if you’ve got the time and capacity. Probably just give them the entire presentation!

 

[Sean]

Another victim of Prof Crawley's glorious career.

 

[bobbler]

slide 19


This illustrates the issue of psychological harm, which I believe is often overlooked. From the summary of the Cochrane protocol for the new (and now abandoned) Exercise Therapy for ME/CFS review, the consideration of harm appears to be only of physical harm, related to PEM. But, if the benefit of GET is a poorly evidenced 'zero to less than clinically significant', then the substantial risk of psychological harm (which can manifest as suicidal ideation) surely outweighs that questionable benefit.

And even if somehow it doesn’t cause harm (illness-wise) in the language of physical assaults or situations then it causes however many years or a lifetime of putting someone in a hell (which isn’t ok to do to someone and someone then weaponising labels in the hope such hell will make them true is even more dystopian) and in the language of what you hear in courts: lost years, opportunities, defamation of reputation, pain and suffering and ‘hurt feelings’

none of those things are ok to impose on someone and they don’t require ownership or any personality type of the receiver to be wrong, inappropriate and dangerous unkind things to do. The blame and description should also be firmly on the doer of these things as the subject rather than all rephrased as about the object and if damaged then pathological terms infer it’s something in them to be fixed - who would think this was ok to put people into such hell. And to do so for many years is a loss of life in itself.

But also the sheer darkness of realising people can do this to another human and be callously indifferent when they see what it does by denying or deluding themselves their actions wouldn’t be awful for anyone including if they were trapped into said dystopia themselves.