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

 

Great poses but newspapers don't use drawings for these sorts of articles. We've got to adapt our strategy to their normal way of working - that way, we'll have the best chance of success.

 

Thanks Sasha for writing about this, you're spot on, of course.
Great to have some appropriate images to point journalists to.

 

I agree with most of this article, but this line bugged me: "If they’re so sick, how come they’re at the office? Why aren’t they crashed out at home, in their pyjamas?"

Some people with ME are still healthy enough to work. I don't think that means they're not sick. I wish our community would get over this "I'm sicker than you" holier-than-thou nonsense. It's the exact same thing the biopsychosocial crowd does -- telling patients that they're not really sick.

 

I agree with most of this article, but this line bugged me: "If they’re so sick, how come they’re at the office? Why aren’t they crashed out at home, in their pyjamas?"

Some people with ME are still healthy enough to work. I don't think that means they're not sick. I wish our community would get over this "I'm sicker than you" holier-than-thou nonsense. It's the exact same thing the biopsychosocial crowd does -- telling patients that they're not really sick.

Yikes, really not my intention but I see how it could be read that way. My intent there was to contrast the sort of images that PWME have been getting in the media with those that PWMS or cancer get. The generic MS or cancer patient isn't generally shown at the office - they're shown in a context that makes it clear that their problem is serious. The conclusion isn't drawn from that that people with those conditions who are more functional aren't sick, just as it shouldn't be for us - rather, the person looking really sick is seen as an exemplar of the condition at its near-worst. It's the same with how the media illustrate an article on climate change - you show how far the polar ice has retreated, not a snowball melting in Swindon.

I completely agree with you that there's a lot of nonsense written by patients on forums (including these, sometimes) that if you have mild ME, you don't have ME at all. It's such a bizarre thing to say. I can't understand the logic at all.

 

I agree with most of this article, but this line bugged me: "If they’re so sick, how come they’re at the office? Why aren’t they crashed out at home, in their pyjamas?"

Some people with ME are still healthy enough to work. I don't think that means they're not sick. I wish our community would get over this "I'm sicker than you" holier-than-thou nonsense. It's the exact same thing the biopsychosocial crowd does -- telling patients that they're not really sick.

But now that you've pointed this out, it's bugging me and I don't want it misunderstood. If you'll bear with me, I'll see if I can make an edit (I don't have full edit access to everything so it's not straightforward or quick).

Thanks for raising this!

 

@greeneagledown (or indeed, anybody) - I've edited the photo page itself. Does it read OK to you?

http://phoenixrising.me/stock-photography

I've put in for an edit to the front page and the forum version but it will take a while to process.

Thanks again!

 

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.

Yes, something in the eyes . . . that "glassy, bleary, spaced-out" look. I know when I have it while away from home, despite no mirrors to confirm it, by the way strangers (eg. cashiers) look at me. They slyly do a "double take", followed by a quizzical, suspicious and uncomfortable glance away. I realize they know there is something "off" about me.

 

I recognize that 'something in the eyes' of ME sufferers but I don't think the general public always does. I have mild ME yet I can look bad enough to get stares from people ( I used to wonder why people, especially friends, gave me 'dirty' looks and was hurt by it 'till I figured it out), but I think the real issue is getting people to accept the fact that you don't have to look sick to be sick.

If you use someone who looks sick in the photo then people who don't look sick may have a harder time being taken seriously.

 

The idea I think works well is what @jspotila did a couple of years ago -- she had a *before acivity* and *after activity* photo of herself that shows the effects of PEM.

The pics are on her blog, although of course she'd have to be asked for permission. Or maybe someone has access to models (for anonymity) that could depict the before & after.

 

@greeneagledown (or indeed, anybody) - I've edited the photo page itself. Does it read OK to you?

http://phoenixrising.me/stock-photography

I've put in for an edit to the front page and the forum version but it will take a while to process.

Thanks again!

Thanks. I thought that probably wasn't your intention. It's all good.

We cool.

 

The idea I think works well is what @jspotila did a couple of years ago -- she had a *before acivity* and *after activity* photo of herself that shows the effects of PEM.

The pics are on her blog, although of course she'd have to be asked for permission. Or maybe someone has access to models (for anonymity) that could depict the before & after.

That's a very interesting idea. Again, a photo of a real person wouldn't be used by the media to illustrate a general article - that's really not how it works - so a photo of Jennie would only be used in an article about Jennie.

But there's no reason why a model couldn't be used (with Photoshop, if necessary). Not sure how much mileage this idea would have in general but I think a one-off use could be powerful. I think it would be odd if lots of articles about ME had before/after shots - because again, that's not normal for the media.

I think the best we can hope for right now is to get ME represented as a condition that's as disabling, at its worst, as other conditions that are, at their worst, also very disabling.

But in the near future, maybe we can get some pictures of brains! Such as in this article about MS. That would get around the "invisible illness" issues and would help ram home the notion that this is an organic disease.

 

But in the near future, maybe we can get some pictures of brains! Such as in this article about MS. That would get around the "invisible illness" issues and would help ram home the notion that this is an organic disease.

I don't know if any pictures of actual brains are currently available, but here are a few links to photos of brain scans (SPECT and MRI):

http://www.name-us.org/ResearchPages/ResNeuro.htm (particularly interesting -- the Negative Effects of Exercise on a M.E./CFS Dysfunctional Brain)

http://www.today.com/health/chronic-fatigue-real-new-brain-scans-show-1D80250083 (Not just lazy: Chronic fatigue is real, new brain scans show)

https://www.google.ca/search?q=stan...KHaH4B3oQ_AUIBygC&dpr=1#imgrc=rHDoOIB-5HAhRM:

http://www.meresearch.org.uk/news/brain-abnormalities-in-mecfs/

 

I don't know if any pictures of actual brains are currently available, but here are a few links to photos of brain scans (SPECT and MRI):

I meant brain scans - and those are some nice finds.

 

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.

Do you think it would be possible to have a professional shoot with models, maybe funded by ME charities and/or individual donations? There could be some real ME patients on the set to demonstrate the "look" for the models, and ensure things are going in the right direction regarding poses, make-up, hair, etc.

 

I'm loving the photos. Even with too much make-up and with attractive models, those ones do a good job of looking pained, listless, exhausted, etc.

One link doesn't work: MB#5

 

Do you think it would be possible to have a professional shoot with models, maybe funded by ME charities and/or individual donations? There could be some real ME patients on the set to demonstrate the "look" for the models, and ensure things are going in the right direction regarding poses, make-up, hair, etc.

Lots of interesting ideas are coming up. In order to direct our efforts at the best idea, I think it would be great to get the advice from a picture-desk editor about what our best play(s) would be. The issue may not be the lack of suitable pix but the problem in finding them. If you type "multiple sclerosis" into Shutterstock you get a bunch of youngish people in wheelchairs, which is appropriate (you don't want the elderly in wheelchairs unless you're illustrating a story about disability in the elderly, generally speaking). They don't look particularly "MS-ish" (whatever that may look like) - which is appropriate because they're clearly playing a role, not pretending to be actual patients.

To find the pix I found, I ended up using search terms such as "depression", "bed" and so on. I think we need to know how picture editors approach their first search and maybe try to get existing pix tagged accordingly (I'm not volunteering to do this!). I think that would be a matter of contacting the copyright-holders of the pix and suggesting it (as a means of expanding their market).

But your idea would have the advantage of potentially making a bit of a media splash in and of itself, which would help raise awareness directly.

@viggster, do you know any picture-desk editors? What do you think they'd suggest we do, to avoid the "sleepy office-worker" pix?

 

One link doesn't work: MB#5

Thanks - sometimes pix get withdrawn from the libraries. I'll delete that one.

 

Lots of interesting ideas are coming up. In order to direct our efforts at the best idea, I think it would be great to get the advice from a picture-desk editor about what our best play(s) would be. The issue may not be the lack of suitable pix but the problem in finding them. If you type "multiple sclerosis" into Shutterstock you get a bunch of youngish people in wheelchairs, which is appropriate (you don't want the elderly in wheelchairs unless you're illustrating a story about disability in the elderly, generally speaking). They don't look particularly "MS-ish" (whatever that may look like) - which is appropriate because they're clearly playing a role, not pretending to be actual patients.

To find the pix I found, I ended up using search terms such as "depression", "bed" and so on. I think we need to know how picture editors approach their first search and maybe try to get existing pix tagged accordingly (I'm not volunteering to do this!). I think that would be a matter of contacting the copyright-holders of the pix and suggesting it (as a means of expanding their market).

But your idea would have the advantage of potentially making a bit of a media splash in and of itself, which would help raise awareness directly.

@viggster, do you know any picture-desk editors? What do you think they'd suggest we do, to avoid the "sleepy office-worker" pix?

Those lame photos of sleepy people are from stock photo agencies and they're tagged with the word "fatigue". That's how they're found.

 

Those lame photos of sleepy people are from stock photo agencies and they're tagged with the word "fatigue". That's how they're found.

That's why I'm wondering how picture-desk editors would advise us to improve matters. Do they start out with "chronic fatigue syndrome" and then go to "fatigue" when that fails? Are they just going to keep searching on "fatigue" for ever? Is it going to take a name-change for the disease before we see this change? Is there any point trying to raise awareness among them, given the multitude of outlets? If our disease gets a different name(s), then what? How do we get stock library photographers to start using the tags?

I can't help but think that picture editors would have some helpful insights into what we can best do.

I've noticed this past year that there's been a big improvement in the media in the pix that are being used and I'm wondering how that's been happening - whether it's down to contributors trying to have an input.

 

Not that this isn't complicated enough but I thought I'd bring up the fact that for so many the brain disfunction is worse than the "fatigue". Funny, I actually miss real fatuige as I remember it. It was a pleasant feeling at times and I haven't felt it since I got "Chronic Fatigue".

Anyway... how wold you depict in a photo of the confusion, head spinning, delayed thought process, loss of ability to learn simple things or do basic math while still able to seem normal?

When I was still "working" which was a joke I showed up sat at a computer and tried to do what I could but a 12 year old could have done a better job. It was like I was an illiterate person in certain ways trying to hide it. But on the other hand I could talk about philosophy, joke around, discuss politics and religion with the best of them at good times.

Such a weird spectrum odd symptoms not easily boiled down to what most people can comprehend let alone shown in a picture.

I'm not criticizing at all, I don't think what I'm talking about is really possible but it's getting really frustrating the emphasis on fatigue only at he NIH and the public that I thought I'd throw it out there.