Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?, 2021, McMillan et al [and 2022 update]

The wording will be different on different sites but the idea will likely be the same.

I don't think this is actually good for us. There are some stock images that are high quality and would be appropriate - but the same issue could prevent their use, too.

 

you very rarely see pictures of people in wheelchairs in articles about ME; I don't think people generally realise this happens and that you don't have to be 'very severely' affected to lose the ability to walk as 'normal'.

 

Good topic.

Dutch media used some pretty offensive and/or misleading images. (At some point I considered collecting them.) Like a vase with floppy tullips. Or showing a clip of people running on treadmills in gyms in a news item on CBT/GET.

While researching I found that a big national newspaper in the early nineties used a cartoon to accompany a piece on ME that was just so nasty in its misogyny and obscenity that I nearly posted it here in my WTF-would-you-look-at-this reaction, until I realised that I didn't want to upset anyone (and it probably broke forum rules too ).

Imagery/depiction is important.

 

There aren't only photos, though. There are all kinds of assets at stock repositories, including cartoons. They're not necessarily expensive – typically, you buy a number of credits, which will allow you to use individually-priced assets (simple images are often 1 credit each). The last bundle of credits I bought for a job cost £29, and I think I downloaded six images for that. It's IS expensive if it's coming out of your own pocket, of course, but those are full commercial rates and there might be cheaper options.

I haven't looked into the area of creative commons because I was using them for a business purpose and spending a few pounds on them wasn't a problem, but it's another potential option?

 

Yes, it is indeed coming out of my pocket and I'm already spending a not insignificant amount of money on other things (Facebook ads in order to find pwME, as you literally have to find them one by one in the absence of any sort of previous platform for them), so I would like to keep the costs low. I also post 8-10 articles a month, so that is a lot of pictures.

But yes, there are stock photo websites with absolutely copyright-free images that you can use for almost whatever you want, although those have a much more limited amount and quality of photos of course. (It's because these seem to belong to the otherwise not free, bigger stock photo websites from what I see, so the selection is intentionally not as a good - it is mostly a marketing tool for them to get people sign up for the paid version I guess.)

BUT: it can still be enough for me though, I'm sure I'll be able to manage with these and some other ideas I'm thinking about.

 

The ME Association have a library of photos sent in by PwME to address the misrepresentation in articles on ME. Some people have sent in two photos, one of the private experience of living with ME that the public does not see and one of how they look when out in public. It shows the difference and how we may try to look “normal” when out and about, the consequence of which is to have people telling you how well you look.

The MEA may not share their images but their approach to gathering the photos may be useful?

https://meassociation.org.uk/2021/06/real-me-campaign/

 

I've mentioned the idea of asking people to provide their own photos earlier in this thread and also that while it is a great idea, the people in my (still relatively small) group tend to be on the passive side and have never really participated in such projects when I had similar ideas before despite liking the idea. (This is probably the same reason why no one else has ever advocated for ME/CFS here or why even long haulers don't have advocates, except for one person who is at least trying. It is just how things here are unfortunately.)

The pictures are not for esthetic purposes. It is because of the Facebook algorithm, many people will just scroll over a simple text post (yes, even many pwME), which in turn tells Facebook that the post is uninteresting and it shouldn't show it to more people. Currently FB only shows your post to an extremely low number of your page followers, unless the post gets a lot of interest (it is their business model - if you pay, then more will see it). My posts usually don't gather such level of interest, because I'm still a small page, with mostly research and advocacy news and plain text posts (compare that to a page with cute dog photos or political issues and I've already lost and most of my followers, even the interested ones will never see what is currently going on with the NICE guideline or long covid for example). The FB algorithm sucks and unfortunately I have to trick it somehow, which is a constant struggle. (Currently I have to pay FB to show my posts to more of my own followers.)

Of course, I wouldn't use visually very loud photos, that was never the goal in any way.

Edit: and of course a link with the thumbnail of an image gets more interest, which would be the case for me when sharing an article from the website.

 

I would be hugely cautious about using a photo from a 'free' site. If someone has uploaded a photo of someone without consent, that person could sue you - especially if you've portrayed them as suffering from a stigmatised disease such as ME. And the same limitations about depiction of illness may apply as for the other sites.

 

It is not just photos of people I'm planning to use though but all kinds of relevant images (medical or science-themed, covid-related, etc, often quite abstract depictions), so the emphasis is not necessarily on pictures with pwME/ill-looking stock photo models.

 

Do you have any way of creating JPG or PNG images, that might only contain text? I don't know whether this would get around the algorithm or not, but it being in a photo format that is uploaded in the same way as a photo might work. Here's a (completely rubbish) example of the sort of thing I mean, that I spent all of 30 seconds on!

 

I make basic images like that with Paint which I believe came free with my PC.

 

Getting good photos is a challenge, for sure.
That's partly what prompted our interest in images: our experience trying to find photos for our new website (https://mecfssa.org.au/)

One thing that has really helped is the improved quality of the cameras built into smart phones. People's home photos are now much higher resolution than in the past.
A professional photographer will usually do a better job with framing, lighting, etc. But home photos are usually fine.

Our experience is also that people and organisations are usually very generous when we have requested permission to use their images, including stills from videos.
It's essential to ask for permission and to use attributions of copyright when asked to do so. But such permission is usually given quickly.

 

Hi all! If you posted, ‘liked’ or read comments on this thread, I hope you might be interested in spending just a few minutes helping out with an important, related project here on the forum – namely, to get the media to use better images of PwME in their news articles.

A large group of us have been working together on another thread to choose a pool of suitable photos in the Getty Images stock library, which media editors already use to find photos. We want to suggest to our charities that they include a link to that pool with every press release that they send out, and encourage photo editors to use it.

But we need your help to show that meaningful numbers of PwME and our carers support the pool! We’re therefore aiming for at least 50, and preferably 100 votes on the photo-pool in this poll.

So if you haven’t done so already, please read Simon M’s explanatory post (the first in that thread) and then do the poll.

Huge thanks!

 

Thanks very much to everyone who has voted on the poll so far! We’ll be closing it on January 3rd.

And just a reminder – if discussing individual photos, please don’t post any copies or screenshots of pictures from Getty Images – it’s against their copyright terms and they’re known to use software that crawls the web looking for rogue copies of their images, so it’s best not to.

Thanks again, and happy holidays!

(With apologies for cross-posting.)

 

Poll closed, 90% in favour of the Getty Images collection put together by PwME

Thank you to everyone who voted in the poll! It's now closed.

Please go to this other thread to see plans for getting the collection out where it can help.

 

Merged thread

ME/CFS: Stigma Arising from Online News Media Images and Stock Image Platforms, 2022, McMillan et al

July 2022


Conference: 2022 IACFSME Virtual Conference, 27- 30 July

Abstract
BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) impacts up to 257,000 (1%) Australians. The media has the power to influence perceptions and views across all facets of society and images are a significant element of that influence. Images commonly used by the media to represent ME/CFS do not authentically represent the condition and perpetuate the stigma that surrounds the condition. Stigma is a significant determinant of health that impacts health outcomes. No previous study has examined the authenticity of images used by media articles, nor those available from the image platforms through which stock images are often sourced.

OBJECTIVES: To review the concept of stigma in the context of ME/CFS and using visual framing analysis, assess the perpetuation of that stigma by images purportedly representing ME/CFS that are present on online media articles and stock image platforms.

METHOD: A review was conducted to identify literature examining of identifying stigma issues. Link and Phelan’s 5 conceptualisation of stigma allowed the identification and grouping of issues drawn out of the literature within each interrelated components. The news media images for the analysis were drawn from the four search engines that provided preview images, being Bing News, DuckDuckGo News, Google News and USearch News, and the stock images were sources from Getty Images, Shutter Stock and UnSplash. A Rodriguez and Dimitrova’s 4-tiered visual framing analysis model provided the typology through which the unique attributes (content, style, symbolism and ideology) of each sample image was distinguished. With the assistance of 3 community researchers (within the limits of their health), a codebook was created and tested to ensure reliability during coding. Within tier 1, a number of themes evolved out of the identified frames, and quantitative content analysis was used to tabulate the frequency of each frame. The second-tier analysis identified stylistic-semiotic frames that were quantitatively tabulated. Link and Phelan’s 5 components of stigma provided the tier 3 themes (symbolism) through which images could be analysed. A number of frames were identified under each them, and the occurrence of each frame was tabulated. In the fourth tier, the ideological frames were identified and tabulated.

RESULTS: Using the search string ‘chronic fatigue syndrome’ 452 images were identified among the 4 news media search engines and 3,400 images were returned from the search among the stock image platforms. Tier 1 identified 5 themes, being images that were ‘authentic’, ‘inauthentic’, ‘gender’, ‘social setting’, and ‘neutral’. Articles with ‘no image’ were coded and removed from image totals. Neutral images numbered 25.2% (114) within media images and 8.7% (297) in stock images. 51.3% (232; 2.5:1 females to males) of media and 68.3% (2,323; 2.2:1 females to males) of stock images were gendered. 45.1% (204) of news images and 63.0% (2075) of the stock images, depicted an individual alone. Only 13.5% (61) of the news images were authentic representations of ME/CFS, with none among the stock images. Tier 2 revealed 14 frames. 36.8% (166) of media images and 23.0% (782) of stock images portrayed the subject in a subordinate position. Suffering was portrayed in 30.8% (139) of the media images and 57.4% (1950) of the stock images. At tier 3, 30 frames were distributed across the 5 components of stigma – ‘labelling’, ‘stereotyping’, ‘separation/prejudice’, ‘discrimination’ and ‘power’. The ‘power’ theme contained 8 frames with 7 frame of media images ranging from 44.2% (200) to 50.4% (228) of the images, and the same 7 frames of the stock images ranging from 97.5% (3,116) to 100% (3,400) of the images. The ‘separation/prejudice’ theme demonstrated significant negative stigma, with 6 of 6 frames ranging from 36.5% (165) to 43.8% (198) within the media images and 43.4% (1,475) to 96.5% (3,316) in the stock images. Tier 4 revealed 6 ideological frames. The dominant frames in the media frames were ‘political’, ‘medical patriarchy’, ‘oppression’ and ‘marginalisation’ and ranged from 37.2% (200) to 41.6% (224) of the images. Within the stock images, the same four dominated, and ranged from 73.4% (2,497) to 73.6% (2,501). The ‘biopsychosocial’ frame was highly represented in the stock images at 64.5% (2,192) compared to 25.8% (139) of the media images. Only 9.1% (49) of media images fell within the ‘biomedical’ frame, compared to 64.5% (2,192) of the stock images.

CONCLUSION: The media and stock images demonstrated a perpetuation of the drivers of stigma that surround ME/CFS. Depiction of authentic images of ME/CFS within the media were quite poor, and the availability of authentic images within stock images was non-existent. Given the influence of media and power of images to significantly influence views and perceptions, an improvement in authentic representations of ME/CFS holds potential to decrease the drivers of stigma and help create an environment that holds potential to improve the health outcomes for people with ME/CFS.

https://www.researchgate.net/public...e_News_Media_Images_and_Stock_Image_Platforms

 

@Kitty, I think your point is right on.

For decades media has been stuck on portraying ME as photos of people looking tired and overwhelmed. As you say, portraying ME as a social phenomenon, not a serious disease requiring biomedical research and treatment.

 

Yes, trying to pass as well/normal in public.
Even when feeling desperately lightheaded.

Ages ago I got a bit dressed up to meet someone running for political office. If recall serves I had an appointment to meet with them. I was doing ME advocacy. Unfortunately, the candidate didn't meet me even half way with attention or interest, looked me up and down, and dismissed my requests.

I know part of the problem was that I had wanted to look presentable, and wore nice clothes. "How could this person be sick, she looks good?" But if I had worn raggy baggy old clothes would I have been listened to....
"You don't look sick."

My answer to this is that people in the early stages of fatal diseases often don't look sick either.