August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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The Real ME: A Stock Photography Resource for the Media

Discussion in 'Phoenix Rising Articles' started by Sasha, Mar 23, 2016.

  1. Sasha

    Sasha Fine, thank you

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    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.
     
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  2. snowathlete

    snowathlete

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

    greeneagledown Senior Member

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    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.
     
  4. Sasha

    Sasha Fine, thank you

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    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.
     
    Last edited: Mar 24, 2016
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  5. Sasha

    Sasha Fine, thank you

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    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!
     
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  6. Sasha

    Sasha Fine, thank you

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  7. Old Bones

    Old Bones Senior Member

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    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.
     
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  8. u&iraok

    u&iraok Senior Member

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    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.
     
  9. waiting

    waiting Senior Member

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    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.
     
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  10. greeneagledown

    greeneagledown Senior Member

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

    We cool.
     
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  11. Sasha

    Sasha Fine, thank you

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    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.
     
  12. Old Bones

    Old Bones Senior Member

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    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/
     
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  13. Sasha

    Sasha Fine, thank you

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

    Valentijn Senior Member

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    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.
     
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  15. Valentijn

    Valentijn Senior Member

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    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
     
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  16. Sasha

    Sasha Fine, thank you

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    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?
     
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  17. Sasha

    Sasha Fine, thank you

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

    viggster Senior Member

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    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.
     
  19. Sasha

    Sasha Fine, thank you

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    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.
     
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  20. jamie

    jamie

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    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.
     

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