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]

• August 2021

DOI:10.13140/RG.2.2.30505.72806

• Conference: 2021 IACFS/ME Virtual Conference

Authors Penelope McMillan, Penelope Del Fante, Geoffrey Hallmann,
Jade Barclay


Abstract
Background: ME/CFS is a stigmatised, often misunderstood condition. This situation is compounded by minimal research funding and contested clinical guidance. Use of inaccurate images purporting to represent ME/CFS perpetuates and reinforces biases, preconceptions, misconceptions and stigma. This impedes the influence of emerging research in informing the public, researchers and clinicians about the reality of the condition.

Objectives: This poster challenges people to: reconsider their use of images, given the power of images to educate or misinform understand the damaging effect of inappropriate images that contradict or undermine the accompanying text develop an awareness of appropriate images

Methods:
1. Search the literature on the comparative power of images and text.
2. Undertake content analysis of inappropriate images of ME/CFS.
3. Search the literature for information on the potential for damage from use of inappropriate images.
4. Undertake content analysis of the use of more accurate visual representations of ME/CFS.

Results: Images attract attention, convey complex information rapidly, and enhance retention of associated text. In a search of Google News for articles on research into Chronic Fatigue Syndrome, of the 298 articles found, only 17 contained a realistic depiction of a person with ME/CFS. The remainder involved a missed opportunity or misinformation, often through use of inappropriate stock images. Realistic images can convey stories about ME/CFS that current lay and medical vocabulary struggle to adequately describe.

Conclusion: Investment of time and effort to select appropriate images is warranted, given the power of images to either reinforce bias and stigma, or to accurately represent the illness and invoke an emotional investment in the important issues around ME/CFS.

https://www.researchgate.net/public..._Tells_a_1000_Words_What_Story_Are_We_Telling

full text available as pdf

More threads on this topic:
Advocacy Projects and campaigns
Improving images used to depict ME/CFS
A Picture of_ME: media images of ME

 

I remember a conversation I had way back with AfME about their use of stock photos, and the artificial image that was portrayed. Their argument, which I can understand, is that it is very hard to get hold of good quality real photos. Most of the photos that people provide of themselves are of fairly poor quality.

 

I have organised lots of media interviews over the years. One reason stock photos were sometimes used by a media outlet was because the interviewee wouldn’t agree to be photographed and/or supply a photo.

 

How many of us with long term ME when eventually visited by someone the first thing they say to you is "you look well"?
In my case EVERY person virtually across the three decades plus. No wonder stock images are used...

 

I don't understand your logic: are you saying the journalist/media outlet decided not to use a supplied photo by a patient because they looked well? That is not my experience.

 

I think what @freddyV is saying is that many people with ME often hear the comment "oh,.you look well!" as in you don't look sick therefore in many cases maybe a photo of a patient wouldn't do justice to the suffering caused by an invisible illness .

I think this is true in the milder stages but I think at the more severe level people don't look very well. I certainly don't look well, I'm not sure that I always actually look terribly ill though.

Frankly, if it came to a stock image I'd rather see the silhouette of a person in a wheelchair or an image of a shadow on a hospital bed or something. Heck an empty pair of shoes is better than some manicured and coiffured individual wearing nice, uncreased clothing with their hands genteely pressed to their forehead.

 

I think if a normal/nice photo of an interviewee is used, it isn’t necessarily a problem as it can show that looks can be deceiving as the text will show the person’s problems.

Of course, if someone is willing to submit a photo when they are not so well or maybe even two photos (when they look well and ill), as some already share on social media, that might be better again.

 

I was involved for a while working on a website for a charity for the deaf, and we tried to use photos of actual members. They did give an air of reality to the site, but the quality of each photo was a real challenge.

 

I'm not so sure.

If the article discusses the invisible illness angle then maybe.

I think there is still very much the idea that those generally with chronic illness just have difficulty with some aspects of life whereas many of us struggle with all of it.

I think most people would liie the idea of a bit of time off, a down day with their feet up on the sofa wearing clean PJs or leisurewear, binge watching something. That will hopefully have changed a bit post pandemic.

The reality of someone who is a good day past shower day, wearing ancient, possibly quite grubby PJs, hair ling over due a wash let alone a cut..... that doesn't really look quite so comfortable.

I do understand that pictures of patients are a bit difficult to get. There's the reluctance to out oneself and also the quality issue. However, if they can get people dressed up in specially assembled outfits with make up for a photo shoot (as I imagine most of them are) then perhaps we should see if the agencies habe ever done a photo shoot for something with a scruffy, grubby, dishevelled individual.

 

An issue is if an unflattering image of someone else is used alongside an article where someone is interviewed, the interviewee may not be happy with that representation being associated with them.

Even a wheelchair may not be something the patient is happy to be associated with.

Now if the patient themselves submits the image, that could be different,

 

My question is, why do they use a photo at all on a general article?

If you see something in the paper about a new treatment for another condition, do they use a picture of a cancer sufferer or someone with rheumatoid disease? No, they use some kind of scientific-looking diagram, a glass vial, an image from a scanning electron microscope, etc.

To me, this is the biggest source of the discrimination: it's effectively removing the link between ME and science/medicine, and making it a social phenomenon instead.

 

Good point.

 

The weirdest thing about this is that generally speaking, visual representation for most diseases does the exact opposite: they try to use normal photos precisely to show that disease doesn't look like anything and that it can happen to anyone. Often normal photos with smiling people will be used precisely to paint a more positive image, and to make the point that disease doesn't look like anything in most circumstances, at least not anymore (FU smallpox).

What does cancer look like? Usually nothing, the popular image people have of it is from the treatments. The vast majority of diseases have no outward visible signs, there is nothing visually representative of most diseases so they just use normal stock photos or smiling shots. Similar with Parkinson's, you can show the trembling on video, but a photo can't capture that. Usually the representations are biomedical, lab stuff, DNA illustrations, etc. As generic as it gets.

Just another issue where things are made weird and backwards for us.

 

I witness the shocking transformation of my face and posture when I'm at the hair salon. I'm sitting in front of the mirror from beginning to end talking. I'm looking at a different person after an hour. I wonder if he notices?

 

i think @Kitty nailed it. flask, beaker.

or scientist holding test tube, or a sketch of a human with iv, feeding tube, and cannula.

 

I just had a quick look through shutterstock and most of the photos used in articles come under chronic fatigue syndrome (which is included with fatigue ). Most if not all come up with a search on fatigue, and several are for depression.

Under 'myalgic encephalomyelitis' it is predominantly the blue ribbon but little else apart from the ones that also come under CFS.
Yet another instance where conflation with fatigue is controlling the narrative.

eta: I had a look at what came up for MS and it is predominantly people (waist down pictures) in wheelchairs and quite a lot of MRI scans.

eta2: did a quick search and only about 30% of people with MS use wheelchairs 20 years after diagnosis
https://www.goodtherapy.org/blog/five-things-you-may-not-know-about-multiple-sclerosis-0428145

 

Interesting discussion. I am severe, and my husband happens to be a retired photojournalist.


He took a picture of me sleeping in which I look dead, and we used in 2019 for awareness day.


I’ve been sick for a long time—going on 20 years, mild, moderate to severe now, and he’s taken pictures of me in different medical situations over the years —in the hospital, getting infusions, undergoing medical tests.


But I am not sure if the pictures show what me/cfs is like.


I have been pondering ways of using photography to do some good for me/cfs awareness, since I am willing to allow myself to be shown unflatteringly and my husband can take professional pictures. If anyone has ideas I would be interested.

 

This is actually a bit of an issue for me too. I'm currently registering the first Hungarian ME/CFS website ever and I'm planning to post articles primarily there instead of posting things simply on Facebook as I've been doing until now.

Of course I don't want to get into any kind of copyright or personal data protection kind of trouble, and if you want to use pictures that are free to use, then you are mostly stuck with those stock photos unfortunately. And yes, they are far from great, so this is a big dilemma for me too. I'm thinking about asking my group members to volunteer to take some photos of themselves for the better representation but they are usually very passive in these things (even though they tend to like these kinds of ideas in principle). So I'm sure I'll write waaaaay more articles than how many pictures I'll end up with.

I think I'll manage though, but yes, it is actually not so easy.

 

An issue I hadn't been aware of concerning stock images is that part of the license may require that you don't use a photo of a model in any situation that implies a mental or physical deficit.

 

Now, that's interesting. Would ME/CFS be considered a physical deficit? If so, all those newspapers using stock photos of young healthy well-groomed models sitting yawning in front of their computers as a depiction of ME/CFS, could land in some licence-use trouble? Maybe that might result in care being taken to use more realistic/accurate pics for such articles? That would be a good thing.