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Photographs of CFS

Discussion in 'General ME/CFS News' started by Andrew, May 22, 2013.

  1. Andrew

    Andrew Senior Member

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    At the CFSAC meeting, there was criticism of the photographs used by the CDC. I agree with the criticism. But the fact is, I've never seen a decent CFS photo. I hope I'm not sounding too harsh, but when I see a photo of a CFS patient lying on a couch, it only conveys a person lying on a couch. And lots of people lie on couches.

    I'm trying to think of images that can convey how sick we are. I don't have any good ideas yet. The only image I can think of offhand is someone on an examination table hooked up to an IV. I've been there more than once. Of course, just about any image gets negated by the "fatigue" word. But I'm still trying to think of something better then a person lying down.
     
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  2. Sparrow

    Sparrow Senior Member

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    I've recently thought that maybe I should have my husband take photos sometimes when I'm having bad days, just in case they're ever useful. Even then, though, I agree that it's really hard to bring across what it's like. So much is the feeling going on inside that person lying there, or that they can't actually get up. I think that's a huge part of our problem, really. If what was going on with us was visible, people would be jumping much faster to get us treatment, research, and support.

    I do get visibly flushed, or sweaty, etc. sometimes when I've overdone it. I also have a photo of my feet when they're all red and blotchy from standing too long. I have a couple of photos of my BP monitor showing my super low blood pressure (took those ones in case the doctor wouldn't take my word for it). I could take a photo of me wearing my sound dampening earphones, but I think people might just assume I was faking or exaggerating how essential they are sometimes. It's tough because the very worst parts aren't the ones that show up visibly.

    Maybe if we did a series of pictures of people on their couch or in bed, but holding some symbol of what their life used to be. I think that might help people see us as active productive people who were stopped by illness rather than weak people. So maybe one person with a sports trophy, one person with her dance shoes, one person with her gardening trowel, maybe a picture of a child's play they couldn't attend, etc. All looking miserable about what they've had to give up. Something that shows who we used to be, how much life we're missing out on, and how desperately we want it back.
     
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  3. lnester7

    lnester7 Seven

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    When I see Jessica (the birthday girl) and I forgot the other boy's name (that went to graduate on ambulance and IV), I think and I feel yeap CFS alright!!! So I have seen Photos / videos where I have felt they convey CFS so well.
     

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  4. snowathlete

    snowathlete

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  5. Dmitri

    Dmitri

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    Wow, that describes quite well how I feel, though fibromyalgia is not what I have from what I remember. Every symptom listed on that photo applies to me except the needle part.

    When I was much younger, a particular drug reaction caused my entire body to become fiery red and extremely painful. It was very gruesome to look at, but there are no photos of this.
     
  6. Sparrow

    Sparrow Senior Member

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    That's great. We need one of those! Make the internal pieces visible.

    lnester7 - I see it vividly too when I look at her, but I think a lot of people who haven't been through this really don't. They see a perfectly healthy girl who's wearing sunglasses and happens to have a tube sticking out of her (but clearly doesn't need one). I see the head pain, and the sick feeling, and the weakness, and the sensitivity to light, etc., but I think a lot of people don't.
     
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  7. Andrew

    Andrew Senior Member

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    Whoever created that is brilliant. It shows a suffering person with a broken body, and words that explain the symptoms. And then the caption ties it together.
     
  8. Ember

    Ember Senior Member

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  9. Andrew

    Andrew Senior Member

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    I agree with the comments there. This looks like a depressed and anxious person, not someone with ME/CFS

    As for photos, I'm not sure any photo can capture this. What is there to show? I'd prefer CDC to either remove all photos, or get some artwork that conveys the symptoms listed in ICC.
     
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  10. taniaaust1

    taniaaust1

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    Maybe I should get my support workers to take a camera with us when I go and do my shopping.. and then get a photo taken of my next collapse.. me on floor, people staring at me due to that, checkout been closed due to me there. etc. Actually that is a great idea.. then I could date each photo for each time it happened and use the photos to take to the doctors with me who cant even understand that I cant do much cooking and just tell me to try harder while lecturing me to stop missing meals.

    Let me know if a photo of a collapse would be good for ME publically somewhere. (a good one would of been the day I collapsed, onto a pavement when it had been raining and was all bedraggled and wet (I was wearing a skirt that day) and couldnt get up again. Cant tell when it will happen again as its something I try hard to avoid but it happens to me regularly (but far less now that I have two support workers to take me shopping and hence Im out shorter time)

    So far the only photos I have is of my burns due to ME lack of being able to focus and concentrate and loss of ability to judge distance and photos of reactiving blistery, rashy virus of some kind which happens over the roof of my mouth at times I get too run down with this illness.

    Maybe someone can put together a collage of photos to represent ME eg compression support stockings, a whole box of supplements and meds we need to be on, a cane chair, a wheelchair, someone getting IV saline... Id throw a photo of B12 injections to that too seeing I was on those twice a week for a few years and an ambulance to represent the times Ive been taken to hospital due to ME.
     
  11. kday

    kday Senior Member

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    Will this work?

    [​IMG]
     
  12. taniaaust1

    taniaaust1

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  13. kday

    kday Senior Member

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  14. Sasha

    Sasha Fine, thank you

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    I was thinking about this last night and the one thing that probably distinguishes me from a healthy person when I'm lying in bed resting would be the expression on my face. It's not one of depression or misery or pain - it's one of someone waiting. I'm endlessly waiting to have the energy to get up again.
     
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  15. alex3619

    alex3619 Senior Member

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    A photo then with a capation: Waiting to have a life again. ?
     
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  16. GracieJ

    GracieJ Senior Member

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    This floors me. I can meet people and see they have this or fibromyalgia. There is a look on their face that no one else has, a bit of shell-shock and disbelief and tiredness. I've gone up to people I've just met and discreetly begun a conversation and sure enough... they are living this. Why can't others see it?
     
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  17. Valentijn

    Valentijn Activity Level: 3

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    When we're laying down, we're doing it to avoid symptoms. They aren't easy to see then, since we usually don't look like we're wasting away or anything. And covering the eyes just makes it worse, since then you can't even see the pain or how the light is hurting.

    It's easier to see when we're getting run over by symptoms. People do notice when I'm having a bad OI episode, for example (I think my face gets pale, and my face muscles seem to go a bit slack). Other things would be harder to get into a photo ... the way my walking gets jerky or I have trouble interacting, etc.

    I think photos of when ME patients are at their worst is a great idea. Photos from when we're recovering from that by laying down don't help.
     
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  18. Sparrow

    Sparrow Senior Member

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    kday - Those cover some of the symptoms, but I don't think they create the same kind of visceral emotional response as the fibromyalgia one, and I think that's the part we need most. Ideally, people should just be able to glance at the picture without reading at all and still walk away going "ouch!". The way theirs is drawn and written seems to help bring that across.
     
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  19. Nielk

    Nielk

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    What ME would look like if it were visible.


    In defense of the artists, (oops) what I see in the face is much more then just sadness. I see pain. I see not only pain but, sustained pain which has been going on for a while. I also see a great unevenness with the pupils. This is something that I personally see in my eyes when I am crashing.
     
  20. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    [​IMG]
     
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