1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Photographs of CFS

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

  1. Purple

    Purple Bundle of purpliness

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    I think it's very hard to get an illness - any illness - across in pictures. Videos can do a much better job.
    Seewell likes this.
  2. Mithriel

    Mithriel Senior Member

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    My MEsm.jpg

    My son took this photo and I use it as my profile picture. It describes how I feel inside. Sad, tatty, with my stuffing loose, pains all over and trapped.

    Mithriel
    Seewell, Valentijn, GracieJ and 3 others like this.
  3. Nielk

    Nielk

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    Did your son stage this? I'm impressed. I love the way there are so many needles in the head.
    Valentijn likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I can see it with many others too. I discovered that one time while I was part of a study and I could actually easily tell those in the waiting room who was in the control group and those who had the ME/CFS, I was surprised just how easily I can tell. pale, bags under eyes, dark circles under eyes (looking like they havent slept for a week).. and of cause the tell tale slouching due to feeling weak, our body postures are dreadful.. some move around in obvious discomfort just from sitting on a chair.

    Thing with us compared to others, we know what to look out for. There are thou the occassional non sick people who can tell (my current support worker is great with that, she could tell when going downhill from the start..observant of my slight shakiness which others usually miss and has actually seen it in me before Ive noticed it myself).

    edit.. I forgot to say but someone else mentioned it.. i also get a blank look on my face when my brain has been overwhelmed and goes into shutdown mode, some people can notice that.
    Seewell and Valentijn like this.
  5. Jarod

    Jarod Senior Member

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    planet earth
    Maybe a cartoonist would do the trick?

    I would show a person clean shaven and neatly dressed, walking their dog on the beach one day....

    THEN....Two days later, show them on the couch, wiskers, in wrinkled clothes, dirty dishes, mail piled up, vitamins delivered by the folklift/pallet from UPS.... With 25 messages on the message machine, Struggling to remember when the next doctor's appt is....

    The "fatigue" in the name is kind of misleading for some of us....I know some are bedbound though and that's a bummer.....
  6. Mithriel

    Mithriel Senior Member

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    Hi NeilK,

    My son did this for his photography course. His pictures were all weird and his lecturer hated them :)
    It was not done to represent ME and the family went quiet when I said how much it meant to me. They don't want to think I fell that way.

    If you google emily collingridge there are pictures of her which describe ME, she doesn't look at all like someone just lying down. Her picture is the heading for the 25% group.

    Mithriel
    Valentijn, Allyson and Nielk like this.
  7. LaurieL

    LaurieL Senior Member

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    Hows about taking individual pictures that depict the symptoms and experiences of us? And making a portrait? Someone pale, with bags under their eyes, and then the opposite, red-faced and overweight. Someone unable to climb stairs, someone unable to figure math problems, someone unable to get out of bed. The extreme tiredness and the looks associated with it, on, and on. Mesh it with word portraits, of the theories. Brief. Stagger those snapshots with the theories and findings with the looks commonly associated with these. You could make one hell of a poster portrait with these, although it would take quite a bit of cutting and editing......and not everyone would agree with what was depicted, so you could do a set, instead of just one. It would also cut down on size if you did multiple instead of one portrait poster.

    LaurieL
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  8. Kina

    Kina Moderation Team Lead

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    This really resonates with me. I can't count how many times my family has told me I look good which means to them if I look good I must be feeling good. When I look ill which I do at times (mostly a grey pallor), they ask me if I am coming down with something. When I look tired they ask me why I am not getting enough sleep. If I say I am feeling dizzy, they ask me if I have eaten enough. If I lose my train of thought in a conversation or lose my basic grammar skills, they have to make rude comments and correct me. If they can't get it in real life, I doubt a photo would do anything to get them to understand how monumentally crappy I feel day in and day out despite my outward appearance. The only person who actually can tell how I am feeling is my husband and that's because he knows me well enough to read those subtle and not so subtle cues that I am about to collapse, or that I am in extreme pain, or that the environment is pushing me into more symptoms. He's seen me walk through the house holding the walls. He's seen me sit down in stores because I can go no further. He's taken me to the hospital a few times when I have collapsed. The rest of my family doesn't see this and judges me by appearance alone. Arghhhhhhhhhhhhhhhh. It's just like when my daughter is expected to behave normally etc because she doesn't have any physical signs of her disability which is a result of brain damage. Arghhhhhhhhhhhhh. The way one looks is not really a good indicator of extent of any illness/condition.

    If we have a picture of a person with ME/CFS who looks incredibly sick, people with ME/CFS who don't 'look' sick would likely still be discounted. I don't believe there is a single image out there that can actually be a good descriptor of ME/CFS. Well actually, a few years ago I came across a photo display of people with ME/CFS before and after diagnosis and some of the differences were jarring but I can't remember the website and I can't seem to find them by googling.
    Wayne, Seewell, Valentijn and 2 others like this.
  9. Sasha

    Sasha Fine, thank you

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    Actually if it was even a photo of someone lying down in bed during the daytime I'd be happier. It's the photos of beautifully made-up and coiffed women (as though we have the energy to maintain that kind of grooming) in immaculate clothes (ditto) in an office (as though most of us can keep working)...
    Valentijn, Allyson and Nielk like this.
  10. LaurieL

    LaurieL Senior Member

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    Kina,

    I can't count how many people have said the same thing to me. Family is different. They don't want to see illness, they don't want to imagine life without you or any threat there of, and they just won't see it if it doesn't walk up and slap them into reality. I did that when my mom was sick, not out of spitefulness, or lack of empathy, or even stupidity. I did it because I loved her so much, that to imagine her not being their, well,....I couldn't. Its a sort of selfishness that I can't really apologize for, even though now, I would have done or said some things differently.

    Those of us whom, still "look" good to the general population are lost again when represented by photos of those bedridden, and are obviously ill. Even though some of us have been bedridden at one time or another. There are many faces of ME/CFS, we need the general population to recognize them. I like the before and after photo idea too.

    LaurieL
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  11. Andrew

    Andrew Senior Member

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    I've been looking at professional photo resources, seeing if I can find a photo that conveys how I feel. I've only found one that had enough emotion. It's of a cancer patient. But not exactly what I want. So I'm still looking.
    Allyson likes this.
  12. Allyson

    Allyson *****

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    yes good idea and this is what is happening on fb now Alex

    lots of little memes with and image and a short caption.

    SOme of them are comic which i think is agret idea as you can share them generally on fb without thinking you are going to get everyone down (and so then they start blocking them)

    The other thing one society is runnig - not sure who now - is a good day bad day campaign

    two photos - one aon a good day of you looking healthy. the othere how you look on a bad day.

    this is a good idea to show how sometimes we ARE OK but that does not mean we are not ill.

    Unfortunatley you can t copy theses fb memes to this page and other fourms - or post them here.
  13. Allyson

    Allyson *****

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    And yes, Lauriel some of these do deal with just one symptom at a time and that is good

    easy to digest and you can send them out every few weeks or so

    eg, loss of balance....
  14. Seewell

    Seewell Senior Member

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  15. Nielk

    Nielk

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    How about a picture of a white ceiling with the caption: "this is the view for most severe ME/CFS sufferers"
    Seewell likes this.
  16. Wayne

    Wayne Senior Member

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    Totally agree GracieJ. I've noticed for decades now what I call "the look". I almost always see it in the eyes -- the pain, the exhaustion, and more (sort of undefinable in a way). An article that was posted on the ProHealth board talked about a husband and wife team who have been long-time advocates for pwCFS. As soon as I saw the accompanying picture of Bob, I knew IMMEDIATELY he has had CFS (long-term). Here's a link to the article and picture:

    ProHealth is Proud to Announce Bob and Courtney Miller as Its First ADVOCATES OF THE YEAR
    GracieJ likes this.
  17. Kina

    Kina Moderation Team Lead

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    I can see it in others too, why can't non-patients? :(
  18. Seewell

    Seewell Senior Member

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    Know this dosnt help with the photograph question
    But just wanted to add,as Taniaaust1 said on my worst, confused,brain fog days others can see it written
    all over my face.

    I could see it in that guy Wayne..
  19. Nielk

    Nielk

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    Talking about brainfog, here is a picture from: www.facebook.com/MEAwarenessPics

    [​IMG]
    Seewell likes this.
  20. Seewell

    Seewell Senior Member

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