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The Real ME: A Stock Photography Resource for the Media

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

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.

Orthostatic-intolerance-chronic-fatigue

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

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.

sleeping-time-650684_640

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!

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{ 106 comments… add one }

  • Asa March 26, 2016, 7:52 am
    taniaaust1

    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..

    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?

  • leela March 26, 2016, 7:55 am

    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.

  • Asa March 26, 2016, 8:04 am
    Sasha

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

    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.

  • panckage March 26, 2016, 9:42 am
    taniaaust1

    Professional models trying to look like ME patients, just wouldn't pass the look.

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

  • Owl42 March 26, 2016, 5:10 pm
    panckage

    How about this one:
    [​IMG]

    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

  • wastwater March 28, 2016, 8:16 am

    I feel like I'm in a state of permanent withdrawal

  • u&iraok March 28, 2016, 8:30 am
    rosie26

    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.

    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.

  • Jeckylberry March 28, 2016, 6:32 pm

    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?

  • rosie26 March 28, 2016, 9:07 pm
    u&iraok

    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.

    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.

  • u&iraok March 29, 2016, 6:40 am
    rosie26

    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.

    Ah, the ever present drive to lie down. If I could just lie down…I dread appointments, they are too much.

    When my husband worked at a hospital he could always recognize the ME/CFS patients waiting in Rheumatology by the look around their eyes and the way they couldn't sit up and were slumping or holding their heads in their hands and moving their heads around to ease their necks. I wonder if that would be a good picture, of someone who looks sick and is slumped in a doctor's chair.

  • Andielyn March 29, 2016, 12:12 pm

    ME eyes…know exactly what you mean. Have them today. Just took a selfie of me at my desk. I look haggard, like I barely got myself to work (all true) but beyond the disheveled look, hair pulled back, no make-up, I have those ME eyes. Ironically my eyes were always my best feature…I got so many compliments on my eyes throughout my life. They were my stand-out feature, from babyhood into adulthood. Now even on my best days it's ME eyes staring back at me in the mirror. ~Andielyn

  • rosie26 March 29, 2016, 5:20 pm
    u&iraok

    Ah, the ever present drive to lie down. If I could just lie down…I dread appointments, they are too much.

    When my husband worked at a hospital he could always recognize the ME/CFS patients waiting in Rheumatology by the look around their eyes and the way they couldn't sit up and were slumping or holding their heads in their hands and moving their heads around to ease their necks. I wonder if that would be a good picture, of someone who looks sick and is slumped in a doctor's chair.

    ME patients do have a certain look, you can spot them when their symptoms are severe to moderate. I noticed recently in a photograph of myself that 'the look' wasn't there and I stared at the photo for longer than usual. Sometimes now I don't have it. I don't get the headaches and severe sinusitis like I used to but I have other symptoms now which are moderate to severe. The illness changes in different ways as many years pass.

    Many years ago when trying to pick someone out in a crowd on TV who had ME, was easy. It was a well known person and I was able to find them because of the shuffle and slow turning head plus the eyes, wide open eyes hardly blinking. I could see she was concentrating on her balance in a crowd where there was motion all around her.

    u&iraok

    When my husband worked at a hospital he could always recognize the ME/CFS patients waiting in Rheumatology by the look around their eyes and the way they couldn't sit up and were slumping or holding their heads in their hands and moving their heads around to ease their necks. I wonder if that would be a good picture, of someone who looks sick and is slumped in a doctor's chair.

    When Dr Kilmas came out our way I went along to listen to her and was only able to sit there for a half a hour. I was rubbing my neck and my forehead. I could feel my eyes losing focus and I was unable to concentrate on what was being said. I looked around to see if anyone else was struggling but in my immediate vision I couldn't see anyone else. I was so disappointed but it was impossible to sit there any longer.

  • rosie26 March 29, 2016, 5:31 pm
    Andielyn

    ME eyes…know exactly what you mean. Have them today. Just took a selfie of me at my desk. I look haggard, like I barely got myself to work (all true) but beyond the disheveled look, hair pulled back, no make-up, I have those ME eyes. Ironically my eyes were always my best feature…I got so many compliments on my eyes throughout my life. They were my stand-out feature, from babyhood into adulthood. Now even on my best days it's ME eyes staring back at me in the mirror. ~Andielyn

    I look sick when I am severe too. It's only when my ME eases that I don't look sick.

  • Jeckylberry March 29, 2016, 9:56 pm

    View attachment 15195 Here's a good example…

  • valentinelynx March 29, 2016, 11:59 pm
  • u&iraok March 31, 2016, 7:07 am
    Andielyn

    ME eyes…know exactly what you mean. Have them today. Just took a selfie of me at my desk. I look haggard, like I barely got myself to work (all true) but beyond the disheveled look, hair pulled back, no make-up, I have those ME eyes. Ironically my eyes were always my best feature…I got so many compliments on my eyes throughout my life. They were my stand-out feature, from babyhood into adulthood. Now even on my best days it's ME eyes staring back at me in the mirror. ~Andielyn

    Wow, I just remembered, me too. I forgot that I used to have nice eyes and got compliments! Now I always wear glasses which I like because it covers up how sick my eyes look! When my husband tells me I look nice (he's not just saying that, we have an honesty policy), I'm shocked because I just think I look bad now.

    I can usually look at people and notice when they're sick. I noticed that nurses can do that too. When I visit people in the hospital the nurses stare and stare at me. Sometimes I'll say, "ME/CFS" or "Chronic Fatigue Syndrome" for educational purposes when they do that and so they can maybe get to recognize the look. If only the general public could…

  • Art Vandelay March 31, 2016, 10:05 pm

    The signs can be subtle, but a good friend with ME/CFS is able to tell instantly when I'm struggling. She said that my eyes have a waxy look and my face will be puffy and inflamed. Now that I've been spending more time with my family, my mother can also spot when I'm having a tough day.

  • Leopardtail April 1, 2016, 5:01 pm
    greeneagledown

    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 understand what you mean Greeneagle, I worked & stayed in university two decades despite having M.E. The problem was that I was not living a life as well as doing those things. Showing me at work would give not clue how bad the diease and my life were at that time.

    We need society to understand what its like for the worst of us in order to get that impetus to do something much more serious about it.

    That;s my view for what it's worth.

  • Leopardtail April 1, 2016, 8:00 pm
    rosie26

    I look sick when I am severe too. It's only when my ME eases that I don't look sick.

    I do up to a point. But even when bad, I look like somebody with a common cold. I never look the way I feel (at death's door) when really ill.

  • rosie26 April 1, 2016, 9:46 pm
    Leopardtail

    I do up to a point. But even when bad, I look like somebody with a common cold. I never look the way I feel (at death's door) when really ill.

    I think I was being overly optimistic about myself when I said that. I am glad you made me think about that more. I have had a few people (not relatives or friends) tell me they can tell I am sick.

  • justinreilly April 2, 2016, 12:29 pm

    Thanks for this. Great idea!

  • Mark April 6, 2016, 1:24 pm

    A member who's currently unable to log in to the forums has very kindly sent me the following; I haven't time to check out all the links 😮 but it looks like a major contribution to the project…from what I know of this person, they're sure to be really good, and the comments and ideas are typically thoughtful too…

    @Sasha
    I don't know what ought to happen to incorporate these links into the resource, but if you need any help doing that, just let me know.

    I have some photos for review, and wanted to mention on the objective statement, that it could be nice to include a mention of diverse photos (young people, different ethnicities, etc.) I tried to include some of what I noticed was missing (children, Asian people, etc.)

    http://www.istockphoto.com/photo/ill-woman-in-bed-gm535172279-57054300?st=6cf2504

    http://www.istockphoto.com/photo/young-woman-with-headscarf-gm525076153-51807328

    http://www.istockphoto.com/photo/yo…tting-on-hospital-window-gm479951284-68365091
    (hopefully the cancer label isn't a problem, but I really liked the sitting at the window in a robe/dressing gown; while most of us have hair, some of us would cut it if we could, because too much work–and some of us do wear headscarves for this reason)

    http://www.istockphoto.com/photo/girl-lying-under-drip-gm504925128-83428473

    http://www.istockphoto.com/photo/mature-asian-man-in-the-hospital-gm184280364-16955117?st=c736ef0

    http://www.istockphoto.com/photo/reassuring-patient-gm500395290-80740633

    http://www.istockphoto.com/photo/di…-hospital-bed-gm510694318-86363867?st=1657ccf

    http://www.istockphoto.com/photo/sick-woman-gm174928518-21738323?st=1657ccf

    http://www.istockphoto.com/photo/the-patient-on-the-bed-gm492741394-76491095

    http://www.istockphoto.com/photo/kid-sleeping-in-hospital-bed-gm535239151-57073294

    http://www.istockphoto.com/photo/sick-little-girl-in-bed-gm503359772-82486209

    http://www.istockphoto.com/photo/sleeping-gm494389722-77416811?st=a7b05b8

    http://www.istockphoto.com/photo/child-in-hospital-bed-gm528588393-54138938?st=1ee74cc

    http://www.istockphoto.com/photo/sick-bed-woman-gm155915417-22002596?st=dd01d61

    http://www.istockphoto.com/photo/sick-woman-coughing-in-bed-gm183858996-16287364?st=dd01d61

    http://www.istockphoto.com/photo/un…en-nasal-tube-gm462697903-32849122?st=dd01d61

    http://www.istockphoto.com/photo/checking-temperature-gm114254230-9962107?st=dd01d61

    http://www.istockphoto.com/photo/oxygen-user-gm172169320-3301582

    http://www.istockphoto.com/photo/sick-woman-taking-medicine-gm174992836-22554946

    http://www.istockphoto.com/photo/sick-young-woman-sleeps-on-couch-gm177834074-24165694?st=7ea324a

    http://www.istockphoto.com/photo/sick-child-sleeping-gm157643977-14204079?st=d3fd69f

    http://www.istockphoto.com/photo/sick-girl-lying-in-bed-gm499266160-80124041?st=285a373

    Also it might be nice to include some for research/clinical trials and health care/ treatments. They can pick an appropriate generic science photo depending on what the research is about.

    http://www.istockphoto.com/photo/bacteria-gm506759926-84349351?st=bfd390e

    http://www.istockphoto.com/vector/health-care-icon-gm496915288-78824985?st=bfd390e

    http://www.istockphoto.com/photo/co…les-and-pills-gm497128766-78954907?st=bfd390e

    http://www.istockphoto.com/photo/macrophages-on-the-whhite-gm506351818-84055813?st=af3060c

    http://www.istockphoto.com/photo/sa…te-background-gm468981658-61073992?st=023e6fb

    http://www.istockphoto.com/photo/saline-bag-gm178086410-24882843?st=023e6fb

    http://www.istockphoto.com/photo/medical-bottle-and-syringe-gm163301787-23325614?st=023e6fb

    http://www.istockphoto.com/photo/white-blood-cell-gm185241117-19891682?st=c49127e

    http://www.istockphoto.com/photo/vascular-system-3d-rendered-illustration-gm466781656-59949462

    http://www.istockphoto.com/photo/ch…n-the-inflammatory-respo-gm500563928-80837461

    http://www.istockphoto.com/photo/lymphocytes-and-viruses-gm521399859-50280942?st=c49127e

    http://www.istockphoto.com/photo/pathogen-and-cells-gm491919260-76018429?st=c49127e

    http://www.istockphoto.com/photo/white-blood-cell-gm183045641-14359392?st=c49127e

    http://www.istockphoto.com/photo/white-blood-cell-gm183045641-14359392?st=c49127e

    http://www.istockphoto.com/photo/monocyte-gm176978105-26401036?st=c49127e

    http://www.istockphoto.com/photo/receptors-cells-gm488498423-39281392?st=c49127e

    http://www.istockphoto.com/photo/eosinophil-granulocyte-gm483453985-26401178?st=c49127e

    http://www.istockphoto.com/photo/basophil-gm487036466-73124153?st=c49127e

    http://www.istockphoto.com/photo/lymphocyte-gm483348659-26175714?st=c49127e

    http://www.istockphoto.com/photo/human-blood-gm490556513-39737470?st=c49127e

    http://www.istockphoto.com/photo/streaming-blood-gm117868474-8821148?st=c49127e

    http://www.istockphoto.com/photo/immune-cells-fighting-infection-gm156308767-22047429?st=c49127e

    http://www.istockphoto.com/photo/macrophage-virus-gm469816337-34386738?st=c49127e

    http://www.istockphoto.com/photo/dendritic-cell-gm511728014-86784637?st=7047ad3

    http://www.istockphoto.com/photo/virus-and-killercells-gm115964052-3511924?st=7047ad3

    http://www.istockphoto.com/photo/nerve-cells-gm479766094-68211887?st=dad0d76

    http://www.istockphoto.com/photo/nerve-cell-3d-biomedical-illustration-gm168619592-23841957

    http://www.istockphoto.com/vector/glial-cells-gm531120055-55046996?st=8ed77d3

    http://www.istockphoto.com/photo/brain-depiction-gm471190297-34867656?st=8ed77d3

    http://www.istockphoto.com/photo/neurons-in-the-brain-gm477734916-66886037?st=f658db7

    http://www.istockphoto.com/photo/brain-cells-neurons-gm519588709-49566594?st=f658db7

    http://www.istockphoto.com/photo/brain-with-bloodvessels-x-ray-side-gm136191274-15341220?st=f658db7

    http://www.istockphoto.com/photo/brain-pain-gm488267996-74038225?st=f658db7

    http://www.istockphoto.com/photo/abstract-neural-network-gm163674549-23411348?st=f658db7

    http://www.istockphoto.com/photo/ne…brain-surgery-gm538240211-58141064?st=f658db7

    http://www.istockphoto.com/photo/3d…mers-research-gm492260886-76215957?st=212cf4e

    http://www.istockphoto.com/photo/neuroscience-concept-gm478302112-67206833?st=212cf4e

    http://www.istockphoto.com/photo/active-neuron-cells-synapse-network-gm174910020-21729689?st=7e020fb

    http://www.istockphoto.com/photo/lab-experiment-gm516422160-88989645?st=119ce8e

    http://www.istockphoto.com/photo/me…he-laboratory-gm511803326-86829419?st=119ce8e

    http://www.istockphoto.com/photo/drop-of-liquid-in-a-test-tube-gm174538202-26033928?st=119ce8e

    http://www.istockphoto.com/photo/biologist-gm504642564-83154013?st=119ce8e

  • Sasha April 6, 2016, 1:28 pm
    Mark

    A member who's currently unable to log in to the forums has very kindly sent me the following; I haven't time to check out all the links 😮 but it looks like a major contribution to the project…from what I know of this person, they're sure to be really good, and the comments and ideas are typically thoughtful too…

    @Sasha
    I don't know what ought to happen to incorporate these links into the resource, but if you need any help doing that, just let me know.

    That's fantastic, and a lot of effort has gone into that. I won't be able to get around to this for quite a while as I'm short on time at the moment, but you can see how I've done these on the actual resource page, so if you'd like to add any in, be my guest!

  • Kanae April 9, 2016, 9:54 pm

    I've met a couple of people with "CFS": they look like they are wearing a mask to hide how they really are. Nobody wants to know that you're sick; and if they did, then they'd just take advantage of the situation. I have ME, and apparently I act antisocial & scowl. The best stock of how I feel would look something like: https://i1.rgstatic.net/ii/profile.image/AS%3A272976478208001%401442094072756_l/Simon_Wessely.png
    or: http://www.thetimes.co.uk/tto/multimedia/archive/00815/e9dc4c34-7b39-11e4-_815159c.jpg
    or: https://i1.rgstatic.net/ii/profile.image/AS%3A272976478208001%401442094072756_l/Simon_Wessely.png
    though a lot blurrier. Well, that would be me looking my best. I get a lot of fun therapy out of Simon. He has done much to promote the profile of ME & CFS; and whenever I think of CFS I think of Simon fondly.

  • Sasha April 13, 2016, 10:06 am
    Mark

    A member who's currently unable to log in to the forums has very kindly sent me the following; I haven't time to check out all the links 😮 but it looks like a major contribution to the project…from what I know of this person, they're sure to be really good, and the comments and ideas are typically thoughtful too…

    Thanks again for these (and to the member who suggested them). I've added many to the resource page (some I excluded, such as the ones with that seemed to clearly say "cancer" or "acute illness" or "surgery" or that had people getting interventions that I've never heard of with ME, such a nasal oxygen) but there were some great ones there, including the ones of kids.

    :thumbsup:

  • leela April 13, 2016, 12:26 pm

    @Sasha, I use nasal oxygen quite frequently, actually. Many PWME do.

  • Sasha April 13, 2016, 12:57 pm
    leela

    @Sasha, I use nasal oxygen quite frequently, actually. Many PWME do.

    That's interesting – I wonder if that's a US thing? I've honestly never heard of it.

    One thing I wanted to avoid with the photos was looking like the photo is illustrating a different disease, and I was worried that the nasal oxygen would do that (one reason that I generally avoided photos of the elderly, because although the elderly do have ME, when people see someone elderly in bed or a wheelchair I think they're likely to think of general diseases of ageing).

  • May12th April 18, 2016, 3:25 pm

    Canada's Action CIND has a similar project if anyone wants to contribute photos. It started as a May12th project some time ago just didn't have resources to get it going. You can contact them at info@actioncind.org.

  • belize44 April 19, 2016, 9:27 am

    I don't know of any pictures to suggest, but I think of images from my own past, that I now wish could have been photographed. Getting the reality of this disease across in hard hitting images is what would make a difference, for sure. I think of the times I was too weak to get out of bed and tend to my toddler; this brings to mind a picture of a woman lying on her bed, exhausted, with a toddler seated next to her bright eyed, toys scattered across the bed. Perhaps one of the woman's hands rests lovingly on the child, as if to say I wish I could get up and play with you…Or a picture of someone in the background, leaning against a doorway, clearly exhausted, and in the foreground a table piled with dirty dishes or maybe half folded laundry. Things like this paint a more accurate picture, in my humble opinion.

  • Maggie21 April 22, 2016, 8:49 am
    Old Bones

    @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.

    Perhaps the answer is if a particular patient is being talked about in the article hopefully they will be prepared to provide a photo of themselves that way the picture will match the description. If the patient is not then don't put a photo in at all, it isn't necessary after all. If they must put something in put in some sort of diagram describing symptoms or a graph with relevant figures or something of that sort.

    If the article is general and doesn't mention specific patients then put in a few pictures representing varying degrees of severity, with real or imaginary patients, and/or some aforementioned relevant diagrams.

  • michaeljoseph April 23, 2016, 11:35 pm

    There is nothing wrong with the photo of the boy. His face is on the top right of rules of thirds composition grid and the wheelchair is a leading line to his face. His toys give it a nice touch and the background is slightly blurred to accentuate him .He is back lit or side lit too . in all he looks very natural

  • KitCat April 24, 2016, 8:07 pm

    brilliant! thanks for doing this.

  • Leopardtail May 4, 2016, 5:18 pm
    Sasha

    That's interesting – I wonder if that's a US thing? I've honestly never heard of it.

    One thing I wanted to avoid with the photos was looking like the photo is illustrating a different disease, and I was worried that the nasal oxygen would do that (one reason that I generally avoided photos of the elderly, because although the elderly do have ME, when people see someone elderly in bed or a wheelchair I think they're likely to think of general diseases of ageing).

    I had the same thought Sasha. If people have something identifiably different, we look disingenuous.

  • Leopardtail May 4, 2016, 5:26 pm
    Old Bones

    @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.

    As long as we are using a genuine ME patient who looks like death warmed up – I don't see the problem. Cancer campaigns didn't use people looking amazing – it would have been counter-productive. If ypu want to raise funds, which is the point of the excercise, then we need to generaye real sympathy for the disease.

  • Sasha May 5, 2016, 12:18 am
    Leopardtail

    As long as we are using a genuine ME patient who looks like death warmed up – I don't see the problem.

    Again, we've got to bear in mind that the media tend to only use genuine patients in their photos when the article is about that particular patient. Otherwise, they use someone who is clearly a model.

    But if we're trying to raise funds, we're not bound by that principle. The PWME who is petitioning (25k signatures now, I think) for more NIH funding has a picture of herself lying in bed.

  • Leopardtail May 5, 2016, 12:24 am
    Sasha

    Again, we've got to bear in mind that the media tend to only use genuine patients in their photos when the article is about that particular patient. Otherwise, they use someone who is clearly a model.

    But if we're trying to raise funds, we're not bound by that principle. The PWME who is petitioning (25k signatures now, I think) for more NIH funding has a picture of herself lying in bed.

    I am not crystal clear what you are trying to say Sasha.

  • Valentijn May 5, 2016, 12:56 am
    Leopardtail

    I am not crystal clear what you are trying to say Sasha.

    Journalists and media outlets don't want photos of real patients, unless the story is about that particular patient. They want generic stock photos, not photos of specific patients.

    So having ME patients pose for photos and send them in won't help with the problem of the media using crappy stock photos. They simply won't use the ME patient photos, and will continue using stock photos regardless.

    Thus the solution is to have a compiled list of appropriate existing stock photos, getting ME/CFS added to those photos as labels so they turn up when searching for ME/CFS, and possibly creating and adding additional professional photos of non-patients (models) to use for ME/CFS.

  • Sasha May 5, 2016, 1:20 am
    Leopardtail

    I am not crystal clear what you are trying to say Sasha.

    Not sure if you've read the article or are coming to the discussion late, but my article is about when the media use personal photos and when they want generic ones – such that PWME trying to supply the media with personal ones in the hope that they'll be used for general stories won't be productive.

  • PhoenixDown June 14, 2016, 11:43 am

    Just come across this old BBC article where they've use a reasonable picture to illustrate ME.

    http://news.bbc.co.uk/1/hi/health/183239.stm

    View attachment 16045

    May be the media took ME more seriously in the 90's or may be they didn't have the stock photography they have today. Notice how they open the article by using myalgic encephalomyelitis (ME) not CFS.

  • panckage June 14, 2016, 2:17 pm

    @PhoenixDown that picture looks to me like someone about to sneeze more than anything :rofl:

  • slayadragon July 7, 2016, 2:23 pm

    That is a good collection of photographs that you put together, Sasha.

  • Bob September 4, 2016, 6:17 am

    Re the official Phoenix Rising photo resource page…
    http://phoenixrising.me/stock-photography

    It's been noticed on Twitter that all the links to the photos have been broken. It's not a bug on Phoenix Rising but I assume that istock have changed their software.

    It looks like the links are retrievable with a bit of googling.

  • Bob September 4, 2016, 6:20 am
  • Lucibee September 4, 2016, 7:53 am

    @Sasha Hope you don't mind, but I've downloaded and edited the Stockphoto list with updated/corrected links, if that's of use. Shall I upload it here or send to you direct?

  • Sasha September 4, 2016, 10:06 am
    Lucibee

    @Sasha Hope you don't mind, but I've downloaded and edited the Stockphoto list with updated/corrected links, if that's of use. Shall I upload it here or send to you direct?

    Hi Lucibee – thanks for doing that – unfortunately unable to look at the mo.

    I think someone did some edits on the page after me – @Mark? I don't know if anyone with edit access has the capacity to take this on?

  • simeyss September 4, 2016, 4:15 pm
    Lucibee

    @Sasha Hope you don't mind, but I've downloaded and edited the Stockphoto list with updated/corrected links, if that's of use. Shall I upload it here or send to you direct?

    Thanks so much for doing this, @Lucibee!

  • Mark September 5, 2016, 1:45 pm
    Lucibee

    @Sasha Hope you don't mind, but I've downloaded and edited the Stockphoto list with updated/corrected links, if that's of use. Shall I upload it here or send to you direct?

    As Sasha has suggested, we don't really have any volunteers to do this right now, apart from those of us who have to focus the limited time we have available for Phoenix Rising work on more fundamental matters. I think the best thing would be if you could post your updates here, then I'll keep your post in my bookmarks and if any volunteers appear I'll ask them to do the appropriate edits. Anyone who feels capable of editing a Wordpress page could do it, just in case anybody reading is interested.

  • Esther12 September 5, 2016, 2:17 pm

    Sounds like PR admin are extra stretched at the moment – thanks to everyone chipping in.

  • Bob September 5, 2016, 8:34 pm

    I can sort out the editing, slowly, if the links are posted here.

  • Sasha September 6, 2016, 12:37 am
    Bob

    I can sort out the editing, slowly, if the links are posted here.

    Thanks, Bob!

    @Mark, @Lucibee.