Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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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. u&iraok

    u&iraok Senior Member

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    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.
     
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  2. Andielyn

    Andielyn Senior Member

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    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
     
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  3. rosie26

    rosie26 Senior Member

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    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.

    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.
     
    Last edited: Mar 29, 2016
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  4. rosie26

    rosie26 Senior Member

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

    Jeckylberry Senior Member

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    image.jpeg Here's a good example...
     
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  6. valentinelynx

    valentinelynx Senior Member

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    Tucson
  7. u&iraok

    u&iraok Senior Member

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    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...
     
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  8. Art Vandelay

    Art Vandelay Senior Member

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    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.
     
  9. Leopardtail

    Leopardtail Senior Member

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    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.
     
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  10. Leopardtail

    Leopardtail Senior Member

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    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.
     
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  11. rosie26

    rosie26 Senior Member

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    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.
     
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  12. justinreilly

    justinreilly Senior Member

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    Thanks for this. Great idea!
     
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  13. Mark

    Mark Former CEO

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    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 :eek: 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.

     
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  14. Sasha

    Sasha Fine, thank you

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    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!
     
    Last edited: Apr 10, 2016
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  15. Kanae

    Kanae

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    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.
     
  16. Sasha

    Sasha Fine, thank you

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    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:
     
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  17. leela

    leela Slow But Hopeful

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

    Sasha Fine, thank you

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    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).
     
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  19. May12th

    May12th

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    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.
     
  20. belize44

    belize44 Senior Member

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    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.
     

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