A Picture of_ME: media images of ME

[PeterW]

Hi All,
Thank-you to those who completed a trial survey regarding images portraying ME in the media. Following yesterday's feedback, we have made significant improvements.

The 'final version' of the survey is here: https://www.surveymonkey.com/r/APictureOf_ME

I would be very grateful if people could take the survey and share their thoughts on the representation of people with ME in media photos.

Please also share with other people with ME that you know.

If you have previously completed the trial survey, I would be grateful if you could complete this one as well, as it will add to our data, however I already have the text answers from the first survey, so feel free to disregard those questions.

Thanks!

 

[PeterW]

We have already met our day 1 target. Thank you all. Please keep sharing. There are some fantastically useful thoughts coming in.

We will be writing up the report and logging the results in due course.

 

[Peter T]

Thank you for pursuing this exercise. The layout is much clearer than the trial run and I think separating out severe and very severe in the last question is a good move.

I still have a problem responding in relation to an image that is a poor representation of ME in general but could still be a good illustration for an article on a specific person’s problems. For example the woman in sportswear resting on the pavement, is not a good representation for ME in general but could be an appropriate illustration for someone newly ill coming to terms with their restricted life style, or someone slumped over a pile of books, is not reflective of ME in general but might be relevant to an article about an individual trying to balance life as a student with ME.

This is a major problem in illustrating ME, in that it is so hard to illustrate a condition that ranges from individuals with difficulty managing to sustain a course of study or a job to individuals trapped prostrate in a darkened room.

 

[Hoopoe]

Some thoughts.

We want to have pictures to accompany articles because pictures make articles more attractive and can communicate things that language cannot.

But ME/CFS is an invisible illness, except maybe in those patients that are very severely affected. Photos of the very severely ill patients with feeding tubes and eye cover and the like have the problem that they are not representative of the illness, which risks reinforcing disbelief towards those who don't look like these patients. Photos of the average ME/CFS patient will not have anything that reveals the person as having ME/CFS.

We cannot show PEM in a picture because it's a phenomenon that occurs over time in multiple stages and a picture can show only one moment in time.

The logical conclusion is that we should stop trying to find pictures of patients with ME/CFS for general use because they don't exist. If the intent is to draw attention to the very severely affected then there are pictures available.

What kind of pictures can we use?

Artistic pictures like this one can be very effective at making an article attractive (this one is from a NIH conference on fatigue).


Pictures of researchers working in a lab or a patient undergoing some test can contain many interesting details which draw a reader's attention. Especially if the context is explained. The text accompanying a picture of a patient undergoing CPET machine can explain the importance of this test.

Pictures of patient protests can also be very good. They tell a story and are unique. They are appropriate for articles on neglect or low funding.

If nothing else is available, a generic picture showing a part of the human body relevant to ME/CFS could be used, like a map of the autonomic nervous system, or a picture from a brain imaging study of ME/CFS, or of DNA.

 

[Sasha]

I still have a problem responding in relation to an image that is a poor representation of ME in general but could still be a good illustration for an article on a specific person’s problems. For example the woman in sportswear resting on the pavement, is not a good representation for ME in general but could be an appropriate illustration for someone newly ill coming to terms with their restricted life style

I think the issue is that the vast majority of people won't read a specific story in a newspaper - they'll glance at pictures and headlines and only read the stories that catch their interest. So the slumped jogger with an ME headline is overwhelmingly going to give most readers the impression that PwME can go out jogging but maybe not do quite as well as they used to.

 

[Samuel]

i have partiqally written analyses and scrapped them because i could not finish them. or find them.

even within the mandate of "improve on existing" there are a lot of questions and a lot of possible objectives. i think we are risking working at cross purposes, and might even be at risk of doing the wrong thing.

[representativeness, visibility, making a favorble article seem worth reading, correcting disinformation, stopping perseution, showing it is a scientific topic, showing you can get it, humanness, sympathetic, etc.]

i think it is worth figuring out what we want to do, [other than the obvious like get rid of the image of the guy slumped over the desk who partied last night but it was worth it because he got into alpha omega whatever. [agreed that context can matter there but pointing out that it reinforces widespread propaganda.]]

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i am no expert but i think we can learn from the cdc here.

maybe.

the cdc [in combination with a despised charity] did two campaigns that i recall. both were harmful. one or both were done without consulting the community or even informing the community pre-facto.

AND it was supposedly to make up for malfeasance by the cdc. disobeying the us congress is serious business.

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one was "my legs are shot" in which an office worker massaged her legs. it said get help. it gave cdc address. everybody here can guess what kind of help one would have gotten. cdc info was harmful.

many office [and non-office, significantly] workers have mean bosses and uncomfortable shoes.

the other was "faces of cfs", in which they showed 100 random faces in a shopping mall. and nothign else or nothing elose useful.

they were harmful because they reinforced or introduced propaganda that those who have the disease ARE healthy or nearly so but are e.g. Bad. thus persecution. more below on Bad.

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in the case of faces of cfs, the post-facto rationalization was that random faces shows that you don't have to look sick to have the disease. on the surface, that sounds ok because it's true.

but that wasn't the prejudice most needing fighting. the persecution was not mainly related to random.

the biggest prejudice was that those who supposedly have cfs ARE healthy or nearly so. also getting away with something, making a mountain out of a molehill, being coddled, subhuman, undeserving, privileged, witch, etc.

thus the campaign post-facto deceptively rationalized that orders of magnitude bigger persecution under the pretext of fixing a smaller one that many pwme experience tangibly and proximally and frequently --- they are expected to look sick for some bogus reason and are persecuted by whoever trots out that bogus rationalization. you do not look sick (rly? then why re you lying down?) therefore i am going to harm you.

well yeah, cfs is, on such occasions, sorta expected to look sick if it is to be onsidered legitimate, UNLIKE HUNDREDS OF SERIOUS DISEASES THAT ARE NOT EXPECTED TO LOOK SICK. you just say my son has that disease and it is taken seriously.

but showing that cfs faces look random is not even going to fix THAT problem. it just says you collaborated with the cdc to make this thing where a butterfly landed on your nose into a bogus disease. except not even that. there was nothing that said that you are sick. it just showed random faces. which is a bit llike not reading the article.

FACES OF CFS CORRECTED THE NONEXISTENT MISCONCEPTION THAT PWME ALL LOOK SICK.

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the requirement that you look sick is a side effect of a bigger persecution. it is mostly a pretext for causing harm. even if you fixed it a new pretext would pop up like magic.

and there is no requirement that you look random for the disease to be taken seriously. (there's showing demographics that match the reader's demographics, but if reader thinks/will teh disease is trivial, less useful.)

(i'm not even sure if half naked supermodel is such a bad idea if gets a favorable article read. but at least make the fully clothed model wear a cannula or hold a test tube instead of smiling beatifically or slumping over desk.)

being accused of BEING healthy or nearly so is sometimes accusing the problem of being outside of science as in morality, subhuman, undeserving, trivial. and that is a misconception that needs correcting. IT IS SCIENCE.

i think [1] correcting misconceptions that lead to persecution and [2] getting readers to read an article if it is favorable are the two largest. we should consider showing children, test tubes, cannulas, feeding tubes. misrepresenting the majority isn't the issue i think.

old post https://thekafkapandemic.blogspot.com/2012/09/the-word-invisible-is-problematic-in.html

images not looked at https://mecentraal.wordpress.com/2021/11/24/the-reality-of-me/ .

[ETA: the reality of such things is more complex than i described when i said you are considered healthy or almost so and also Bad.]

 

[Ash]

“UNLIKE HUNDREDS OF SERIOUS DISEASES THAT ARE NOT EXPECTED TO LOOK SICK.”
@Samuel

Yeah I quite agree.

 

[Trish]

I think you make good points Samuel. A lot of us don't look sick. So I think the thing we need pictures to convey is not so much the 'looking sick' part of our disease, but the 'unable to function normally' part, and to convey that it's different from 'normal tiredness'.

That's why I think it's worth campaigning to get rid particularly of the use of images that show people sitting at desks resting their head on one hand - because that immediately conveys the 'normal function with a bit of normal tiredness' message. Showing someone lying down during the day or sitting in a wheelchair at least indicates something is not quite 'normal'.