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The Real ME: A Stock Photography Resource for the Media

Sasha submitted a new blog post:

The Real ME: A Stock Photography Resource for the Media

Sasha announces a new resource of appropriate photos for ME/CFS media stories ...


No! Not this beautifully groomed woman
with a mildly troublesome sore throat!

We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.

But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?

For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.

However, coming up with photos isn’t easy, and it will take a long time to build a suitable pool.

But why is it so hard?

It all has to do with how the media tells stories. Let’s take a look at two health articles in the same UK national newspaper — the Daily Mail.

The first story is about a particular little boy, and all the photos of him have a real-world look which is due to their imperfect, cluttered settings and the not-great lighting and his natural expressions and poses.

The second is a story about a health issue affecting women in general, not a specific person. Note the beautiful women, flawless make-up, elegant clothes, lovely hair — sound familiar? — but also the production values: perfect composition, professional lighting, the total lack of background clutter.

It all says, ‘this is a photographic model in a staged setting, not a person who genuinely has this health problem.’ And it’s an absolutely standard approach by the media to general articles about health issues.


Yes! He’s lying in bed, he’s not in office clothes
and he looks exhausted. That’s more like it!

Unless an ME/CFS article is about a specific patient, that’s the kind of photo we’re going to need to provide: a professionally photographed, high-production-values shot that shows someone who is clearly a model, but who is giving an accurate portrayal of the disease.

That’s the only kind of photo that a media outlet is likely to use: and they’ll want it to be in stock photography libraries because they already subscribe to them and are confident about the licensing arrangements.

Our problem is that when a picture-desk editor types ‘chronic fatigue syndrome’ or ‘fatigue’ into a stock-photo searchbox, it produces the yawning office guys and the headache women.

So until someone produces some professional custom-shots or sorts those stock-library tags out, Phoenix Rising has produced a resource of links to suitable photographs from major picture agencies iStock and Shutterstock.

I hope that our charities who deal with the media will make journalists aware of it, and that they’ll alert their picture desks.

The days of yawning guy are surely numbered.

But meanwhile, have your say.

What do you think of the pictures we're suggesting? Can you suggest any additional ones in a professional stock library that would be appropriate?

Let us know!


Continue reading the Original Blog Post
 
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Thanks for bringing this up Sasha. It is also our responsibility to alert reporters/writers to the presence of pictures (as Sasha did) that better qualify our illness. We have to make it easy for these people to support us. It is important for our health to be helpful Harriets, rather than negative Nancies!

edit: Cort -> Sasha
 
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@Sasha This is an interesting and thought-provoking article -- thanks. I, too, have contemplated the suitability of photographs accompanying news stories about ME/CFS. I have mixed opinions. Because, the perfectly-groomed, well-dressed, perky woman clutching her head is not representative of how I look most of the time, and certainly not when I'm housebound in "crash" mode. However, the bed-ridden "bagged out" photos similarly misrepresent how I appear to the outside world when I'm adequately managing my symptoms. I suspect I'm not the only ME patient who adopts the "look good, feel better" mantra associated with a cancer diagnosis in women. Volunteers with this program (in Canada, at least), help women hide the effects of their illness/treatment by providing assistance/funding for make-up, wigs, etc.

I guess what I'm saying is that I also perceive risks in always portraying ME patients as they look at their worst. I acknowledge that those in the "most severe" category probably look that bad all the time. But, the symptoms and limitations in those classified as moderate to severe can be invisible to all but their closest family members/friends, who may know what to look for. I've been told I look "great" when I feel absolutely awful and close to collapse. If the media starts to always portray ME patients as looking exhausted and ill, those of us who appear healthy occasionally, for short periods of time, or under controlled circumstances, may be seen as "shirkers" even more than we are now.
 
I guess what I'm saying is that I also perceive risks in always portraying ME patients as they look at their worst. I acknowledge that those in the "most severe" category probably look that bad all the time. But, the symptoms and limitations in those classified as moderate to severe can be invisible to all but their closest family members/friends, who may know what to look for.

Interesting point! I think most of us may well look perfectly healthy most of the time and the only visible sign of illness is behavioural - having to lie down, for example.

But to tell a story about an illness in a newspaper, if it's not showing a particular person who the story is about, then it needs to be a generic person, and if that generic person isn't showing the behaviour of a sick person then they're just a generic person looking normal and there's no point having a picture.

So I think having the bed/sofa/wheelchair pictures is the best we can do - while you make a very good point that it's not a 100% perfect solution.

I hope that one day we'll get to the point where people understand the issues with "invisible" illnesses but we're not there yet.
 
They are missing "that look" though, probably because the models don't have ME.

I took a closer look at the photos. You're right. They are missing "that look". And, how many of us are as consistently beautiful as the models chosen to portray the ill/fatigued women? The representations of the men were much more believable. But, I guess that's typical in a society that still often judges women more on how they look, rather than who they are.
 
I took a closer look at the photos. You're right. They are missing "that look". And, how many of us are as consistently beautiful as the models chosen to portray the ill/fatigued women? The representations of the men were much more believable. But, I guess that's typical in a society that still often judges women more on how they look, rather than who they are.

If you look on Shutterstock and search on "drug addiction" (the epitome of unglamouressness, you would think), the people are still fairly beautiful! Though I notice they've got big, dark shadows under their eyes (probably make-up!). It's just the nature of who goes into the photographic-model business, I suppose.
 
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I've been involved in organising a lot of ME/CFS media coverage over the last 20 years.
In my experience, a big reason reason why stock photos are used is when the patient (or carer/caregiver) won't be photographed or submit a photograph.

I have a million ideas for this but I have no interest in being the face of ME/CFS.

If anyone else is so inclined to have a professional photoshoot, you could take pictures:
  • Crawling up the stairs or across the floor
  • Having someone else dry your hair while you lay on the bed face down
  • Having someone else feed you while you are laying down
  • Having someone bathe you or help you get dressed (PG-version obviously)
  • Having someone help you walk or into your wheelchair
  • Just a picture to depict loneliness and isolation
 
385.jpg
 
Kate-Middleton.jpg


I definitely thought of this as perfect to depict the world and government's reaction to us. It's not stock photo but it's perfect.

I have looked both great and heathy and grotesque and pathetic during different times yet there is always something in the eyes that you recognize in your own pictures and and in other sufferers. Laura Hillenbran is beautiful and put together during press yet you see her eyes have that ME thing happening that no one else would notice.

I was amazed when I went to Peterson's clinic that around town I could spot the patients by their eyes. I had never met another patient before and it was like meeting a secrect club.
 
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I always liked the cartoon one that showed someone dripping over a desk.
I remember seeing a page in a hiking magazine called faces of fatigue where people would send In pics after a 12 mile hike they looked ME ish.
I have to hold my face together try not to grimmace and can't hide the panda eyes when having my pic taken.
that scene in Robocop where he's in pain with helmet removed may also be appropriate
feel like my immune systems giving me a lobotomy
 
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I have a million ideas for this but I have no interest in being the face of ME/CFS.

If anyone else is so inclined to have a professional photoshoot, you could take pictures:
  • Crawling up the stairs or across the floor
  • Having someone else dry your hair while you lay on the bed face down
  • Having someone else feed you while you are laying down
  • Having someone bathe you or help you get dressed (PG-version obviously)
  • Having someone help you walk or into your wheelchair
  • Just a picture to depict loneliness and isolation

These are very good ideas for picture content but unless the article is about a particular person, I don't think the media will use an image of a particular person; and if one PWME has a load of photos done, I think the media will avoid using a picture of the same person over and over.

@Old Bones raised the issue of attractiveness earlier and in the weird and shallow world of the media, I do wonder whether you need to be attractive (even in your decrepitude) to be a photo model for this sort of thing (they wouldn't have me!).

I think these would be good ideas for a team of models, though. You can find, in stock photography, images for "help feeding", for example, but they show the very elderly, rather than young/middle-aged patients. On the other hand, you can find loads of images for loneliness.

A major problem is with the keywords. Type in "chronic fatigue syndrome" and you get rubbish. Type in "depression" and you get a lot of stuff that's actually quite useful for us, but picture-desk editors aren't going to type that in - they're going to type in "chronic fatigue syndrome" or "myalgic encephalomyelitis" and that's going to fail - and then they'll type in "chronic fatigue" and that's where we get all those sleepy office-workers.