International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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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. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  2. Sasha

    Sasha Fine, thank you

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    Valentijn and CFS_for_19_years like this.
  3. jamie

    jamie

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    They use images like this for Alzheimer's. Headline "It's Not Just Fatigue..."

    dementia1.jpg
     
  4. Sasha

    Sasha Fine, thank you

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    I've seen this sort of thing in science mags but not mainstream newspapers.
     
  5. jamie

    jamie

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    I'm thinking more regular magazines, I don't read science mags but see images like this or the one Simon posted often enough. Maybe The Atlantic or The New Yorker off the top of my head? More in depth articles. But I see your point that the mass media and their standard use of photos is most important,
     
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  6. u&iraok

    u&iraok Senior Member

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    A lot of people say that. I agree. I walked around wired and anxious for months until I took supplements for the serotonin and gaba neurotransmitters and was happy to have fatigue again, lol. How would you show the brain issues, wow--if you thought showing fatigue was hard...back to holding the head and grimacing. I really like the Alzheimer's tree losing it's leaves, though.
     
  7. Sasha

    Sasha Fine, thank you

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    I don't think it's possible to show a whole ton of issues in a single photo/illustration and anyway, it's not the job of a photo to carry the whole weight of getting across what the disease is. I don't think we should worry too much about perfection - just getting away from the sleepy office workers and to people in wheelchairs or in bed would get us in line with MS, for instance, and would be much more appropriate and consciousness-raising.
     
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  8. Asa

    Asa Senior Member

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    Should it be helpful (and not thus far mentioned), the following thread, post #11 has photo info/resources for US gov health agencies/library: http://forums.phoenixrising.me/index.php?threads/visual-representations-me-cfs-cfids-seid-etc.38259/


    EDIT: And with the idea of what ME looks like... I'm on the verge of "passed done" today, and am overall experiencing a relapse, meaning I get hit harder sooner longer. And when I get "hit", it's written all over my face. And so I've long wondered if facial muscles/expressions could be used as any sort of measurement tool for people with ME to, for example, provide info for level of severity. I look "drained" if I walk too long, if I talk too much, if I read too much, etc. The look eventually appears in response to "physcial" or "cognitive" exertion.

    Anyone know anything about this? Have any ideas?

    A superficial search "facial muscles fatigue" yielded this 1995 (non-ME) study: http://www.ncbi.nlm.nih.gov/pubmed/7487428

    With the conclusion (in part): "Knowing the amount of facial muscle fatigue of individuals without impairment can be beneficial in developing outcome measures and goals for rehabilitation of individuals with facial neuromuscular dysfunction. Changes in fatigue tests of an individual with facial neuromuscular dysfunction with rehabilitation is reviewed for comparison."

    Why can't people with ME's facial muscle fatigue be measured before/after tasks? And over longer periods (weeks/months) too to collect info of individuals' peaks/valleys? Is this data we could measure/collect ourselves?

    Sorry, Sasha if this is too off topic! (I'm currently too pooped to post elsewhere, but can eventually! :))
     
    Last edited: Mar 25, 2016
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  9. Old Bones

    Old Bones Senior Member

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    @Asa Like you, overdoing it is "written all over my face". Last evening was a perfect example. I watched Dr. Bell's video (almost an hour), and did one PR post -- both while lying in bed. Afterwards, my husband commented on my appearance. My face was red and puffy, my eyelids swollen, with the right eyelid drooping almost shut. The left more-open eye was red, glassy and watery. I'd be embarrassed to have anyone in the outside world see me looking that bad.
     
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  10. rosie26

    rosie26 Senior Member

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    I prefer the pictures that show severe sufferers because they need help urgently and to show pictures of more mild sufferers doesn't show the urgency of the situation of the severe. Until we have some answers with biomarkers we need to put the severe first. I don't know what others think. I am moderate but have severe bouts. So I want the message out there strongly representing the severe sufferers mostly for now.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    I too think they need to start focusing on portraying severe sufferers in photography. When you see cancer articles you generally see a person who looks like someone with cancer with the pictureusually bald or with hair growing back (even if with most cancer sufferers you cant tell to look at them).

    Professional models trying to look like ME patients, just wouldn't pass the look. I found when I was in studies at the hospital, I could always tell just by looking at them who was one of the matched control group people and who was the real ME/CFS person just by looking at their eyes, the wane look of their face etc etc.. they didn't like sleepy tired but often looked like the very life had gone out of them. You cant get a model to portray this.

    I think there should be a "real" stock of ME/CFS photos which media have permission to use or have been put together to represent this illness eg a huge box of of a ME patients medication and supplements to represent our search to try to get our health better..

    I have a photo of me somewhere, all dolled up, I think I had make up on and I'd done my hair bright colours for a happy occasion but I still carried the ME eyes... the photo a contrast of happiness but hauntedness..
     
    Last edited: Mar 26, 2016
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  12. Asa

    Asa Senior Member

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    If not models, what about actors? I'm near convinced that Christian Bale can morph into anyone in any condition. Perhaps local acting communities could be approached, with background info (including stigma info), and asked/challenged to present the look?
     
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  13. leela

    leela Slow But Hopeful

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    This is a great topic and article! I do find it ironic however that when it shows up in the banner area of a page, it features Glamourous Sore Throat Lady o_O
    I wonder if there's a way to change that to Truly Exhausted Man, in the spirit of showing what a difference it makes to immediately see the reality of this illness illustrated so plainly.
     
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  14. Asa

    Asa Senior Member

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    With a tree, there's not so much to judge. Maybe an idea comes through better? Is more universal? It seems that if/when there's a "human" portrayed, then all the human social baggage has the potential to be evoked.
     
  15. panckage

    panckage Senior Member

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    How about this one:
    [​IMG]
    Maybe we can put the 'heroin chic' look to some good use :rofl:
     
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  16. Owl42

    Owl42 Psychedelic bird

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    omg, that looks just like me this summer :( I'm shorter tho. and my skin is worse but it's the impression I gave more or less
     
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  17. wastwater

    wastwater Senior Member

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    I feel like I'm in a state of permanent withdrawal
     
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  18. u&iraok

    u&iraok Senior Member

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    I so agree. When you hear 'lupus' you think, ok, there's a possibility of severity and death. People need to see that this disease can be severe and often is so that 'severity' will come to mind when they think of it.
     
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  19. Jeckylberry

    Jeckylberry Senior Member

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    Great thread. I too have been getting really annoyed with those perfume and make up models having their pathetic little twinges. I've thought a bit about this and I think the problem is more far reaching in its consequences than it appears. Firstly, you have to see that pictures are important to telling a story. That's why publishers always want them, even if they are just stock. A picture is always evocative. Humans are attracted to faces. They makes us uninterested or involved.

    We need to change the acceptance criteria for how we are portrayed, cause publishers to take more responsibility for their pics because they are an authority, a knowledge source. A stock photo of worshippers at a mosque is not an appropriate insertion for an article about a terrorist organisation and that is because of the links that it suggests and even creates. These forehead-pinching, soft-filtered models don't look believable. If they don't look believable, then they look fake, at best they look like their complaint could be fixed with an aspirin, a lie down or a coffee, but they aren't in an article for those things, they are in an article about something purported to be serious... therefore they look psychosomatic. If the publishers are pressed for time etc, and just want to get any old pic under the 'fatigue' search in there, that's not good enough. In the minds of readers, this is a picture or 'face' portraying the illness... And it really doesn't look like we should be encouraging this girl's fears. I mean she might start believing she's really sick! This does no good for the public image at all. Clinical photos are also unuseful. They can appear alienating in a subordinate way, even ghoulish. We don't want to be trivialised or objectified.

    It is laziness, lack of care, lack of engagement in the subject by both the photographer and the publisher. It's the positive lighting, crispness and colour as much as it is the model that makes it fake. The waif example, there, we know she's not not a real street kid, but we fall under the illusion because of all the right posing, the model's 'look' and background setting. She is all in dirty white and taupe, they have utilised shadow and taken shots at angles that parody comic book defiant victim pathos. We are aware of her awkward, at odds body not just her face so there is a sense of alienation going on as well. Dior's waif set were explosive on the fashion photography scene. They advanced the genre like nothing else. But they were models for something else. I wonder how well he could do sick folk if the focus was on clothes. Benetton managed to get childbirth onto a billboard advertising their great 'united colours'.

    There is a couple in Aus who take pics of road kill and they get more dignity in a squashed lizard than anything I've ever seen in ezine articles. People need to be be portrayed with that same kind of focus, creativity and passion. With this approach it wouldn't matter how severe the disease is. A pic of an office worker at the coffee trolley in any state of illness, mild or severe, with the teammates already at the table laughing and enjoying life for instance, would portray a lot. (Thinking about it, it would work as reminder stills for a you tube or tv ad.)

    We need to push dignity over ease of grabbing a stock pic. We need to stress that the current stock portrayals are inappropriate representations. We need a 'face' - a new dispensation in photography that tells how it is and what it looks like to live with ME/CFS or any other chronic, poorly respected illness. What's lacking is engagement and compassion.

    Back to reality tho, even if they just greyed out the cheap and nasty 'oaaahhh, dere's a fwy in my stwawbewwy sundae' shot it would portray more gravity. Something... Anything!! Mr Dior... Any ideas?
     
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  20. rosie26

    rosie26 Senior Member

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    Yes, exactly. We need to present the severe reality of what ME can do. Show the world just how terrible this illness is. You don't see the severe when ME is at it's worst. In my severe years I would hold off going to the doctor until there was a bit of easing and even then as soon as I had arrived at the doctors I would ask the reception if they could put me in an examination room so that I could lie down. I could not hold myself up in a chair for long.

    I am fortunate that I don't need an appointment at my doctors, I can just turn up and that has been perfect for me with an illness like this. It would have been hard trying to make an appointment and keeping it in those years.
     
    Last edited: Mar 28, 2016
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