Stigma in Myalgic Encephalomyelitis and its association with functioning, 2018, Baken et al

Paywalled at http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1419553?journalCode=rftg20

 

This seems to be a misuse of the word stigma:

Dictionary: 'If something has a stigma attached to it, people think it is something to be ashamed of.'

That is to say a stigma is a perception by onlookers of a class of condition or circumstance. Patients do not have stigmas or degrees of stigma. They may have different perceptions of how much stigma others attach to their class of condition. But one would obviously expect people with more severe functional loss to perceive stigmatisation in others more simply because there are more likely to notice they are ill.

I have a tendency to think that the word stigma is completely unhelpful when trying to understand illness.

 

I only read the extract above but:

Stop right there - most of the "stigma" and discrimination I have experienced is due to the fact that people don't believe I have a neurological or any other kind of "condition". At best I'm perceived as a deluded, delicate flower who is afraid of life, doing a bit of exercise and going to work, at worst: a benefit scrounging shirker and malingerer.

 

Yes, that was my thought. But how do we know whether they are reporting a real property of other people (being sniffy) or there sensitivity to sniffiness? And surely we would expect both to correlate with functional disability. To the extent that a p value is a bit silly. You do not sort your potatoes into two piles, one of small ones and one of big ones and then ask other people to judge them as either 'mostly small' or 'mostly big' and assign a p value of 0.001 if they agree with you more often than not, showing that they were not just answering at random.

I agree the experience is real but it is completely opaque to me what they think they are 'measuring'.

 

This looks rather ridiculous to me. The authors have failed to consider other factors which result in stigma towards M.E. sufferers, ie the attitudes and activities of the BPS brigade, the media, insurance companies, benefits assessors, doctors etc etc.

The only factor they have chosen to look at is the one that is a characteristic of the sufferer, ie "functionality", and they've even got that backwards, because sometimes the more functional we are and the more well we appear, the more stigma we face in situations where we need our disability to be taken seriously.

You can't study stigma towards M.E. sufferers without acknowledging the damage done by the immoral career-bent BPS sect and their manipulations of the media, insurance industry, health and benefits systems.

 

Here's the fulltext. Thanks, sci-hub!

http://sci-hub.tw/10.1080/21641846.2018.1419553

 

Here's how they define stigma:

Its slightly better than what you thought, @Jonathan Edwards. But not much. What has power got to do with stigma? Isn't it about the attitudes of society in general? And what's this about people with power "using" stigma "to bring about labelling, stereotyping, separation, status loss, and discrimination". Makes it sound like some sort of conspiracy.

Here's how they measured it:

The results were that:
1. PwMEs scored higher on this stigma scale than the control groups (epilepsy, Parkinsons', MS)
2. PwMEs also scored lower on assessments of Applied Cognition and also on self-reported ability to participate in social roles/activities Satisfaction and level of satisfaction therein.

 

No, I was serious. There's something not right with that definition. Stigma is to do with society's perception of an illness. Its not about power or control. Information can be controlled by the powerful and that information can influence society's perception of an illness. But that's just one of many factors that can contribute to stigma (others are fear of personal harm, revulsion, contempt for the groups most often affected). You've got to be clear about what stigma means and separate it from all this other stuff.

Other than that, the paper is reasonable. But damn, if your whole paper is on stigma, you need a decent definition.

 

Oh, woops, I corrected that above.

 

The Stigma Short-form scale

I often find it useful in such papers to look at the wording of the questionnaires themselves. How they are described in the text may not as good as it could be.

http://www.unife.it/medicina/logope...015-2016/fattori-ambientali-e-qualita-di-vita

 

Shows the economic impact of the illness:

 

Replace 'people' with 'physicians' and we'd have the Stigma by Physician scale.