Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Froehlich, Jason et al

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available. People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic. In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others’ causal attributions relate to lower satisfaction with social roles and activities and functional status. Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma.

Open access, https://journals.sagepub.com/doi/10.1177/13591053211027631

 

A bit of a tangent, but is there a difference between the stigma of a psychosomatic diagnosis and the stigma of other psychiatric conditions?

Inherent in the diagnosis of a psychosomatic condition is the assumption that the patient’s insight and self reporting are faulting and untrustworthy. I think I would find a diagnosis of depression, if appropriate, far less of a stigma, than a psychosomatic diagnosis, not least because my objectivity and insight into how our minds work is a significant component of my identity and sense of self worth. Further such a diagnosis primes the medical machine to disrespect and devalue such patients input into deciding their diagnosis and any care plan, as well as priming the public to see them as somehow unworthy.

With some psychiatric conditions, such as depression, phobias or addictions, it is taken for granted that achieving common understanding and common therapy goals is essential. However with the various psychosomatic diagnoses an aim of intervention is either to convince the patient they are deluded or to to trick them into participating in intervention based of the belief they are deluded.

 

I thought the main difference was that our rejection of a psychiatric label represented stigmatisation of those who accepted it.

 

Short summary posted on the Doctors with ME website:

https://doctorswith.me/stigma-and-causal-attribution-new-research/

 

So the aim of psychosomatic medicine is to make the patient believe they are mentally ill!

Having a mental illness has a stigma, but they are recognized as illnesses nowadays and things are changing for the better. The problem with psychosomatic labels is that it taps into our deep aversion to someone who is claiming the benefits of the sick role while being perfectly healthy. It switches off all sympathy.

Functional Neurological Disorder may have an advantage as a name. Its slogan "software problem, not hardware problem" stills sounds like something fundamental is wrong so may actually trigger the sympathy we feel for someone who is sick.

 

Software problems are seen as inconsequential illness (exercise can't harm you). People will believe you can just be talked out of any worsening of your illness at a later date, which is not the case with me.

 

I was trying to see a bright side It is all dangerous rubbish. At best it is diverting funds from the search for treatments that might work for all these diseases they have hijacked.

 

Yeah, I would say so from my experience.

I had someone with depression who wanted me to phone them and make sure they got out of bed to go for a fitting for their only daughter's wedding dress - a wedding I wasn't even invited to - tell me that people with ME just didn't try hard enough and couldn't be bothered to go to work.

I was not amused.

 

She obviously thought you'd try hard enough to phone her. Maybe you could have proven her right by not trying?

The answer to that is that it's not just work, PWME also don't try hard enough to have hobbies or a social life or do anything they used to enjoy. As getting-out-of-work scams go, feigning ME is hardly the cleverest choice. Maybe we should all have tried hard enough to come up with a better way of avoiding work.

 

And if we were trying to claim benefits we weren't entitled to surely anything would be better than ME.

 

She was very clear a phone call.wasn't forthcoming by the end of the conversation.

It was also made clear that if she was that disinterested in her daughter's wedding then it was time she pushed herself to get in touch with her doctor.

If memory serves I made the point that ME also meant that not only was I not working I never got to have a son or daughter (she had both), so would never be going to their weddings.

 

Glad you bloody told her.