Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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From Canary in a Coal Mine: LET'S RETIRE THE LAZY-TIRED IMAGE

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Feb 12, 2015.

  1. Dreambirdie

    Dreambirdie work in progress

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    From Canary in a Coal Mine: LET'S RETIRE THIS IMAGE

    "We're in a moment of highest attention and media coverage of ME/CFS since XMRV and despite the content of the IOM report, old, destructive and wholly inaccurate media images of our disease continue to circulate widely. Let's make it easy for journalists to find more accurate images. Let's have a central place to point editors and producers to when they make a mistake either selecting subjects for a news segment or use an unfortunate stock photo in a written piece, so they can do better next time."

    Submit to your photos and video to this new photo pool: https://www.flickr.com/groups/meaction/pool/
    ‪#‎MEAction‬
     
  2. Sasha

    Sasha Fine, thank you

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    Great idea!
     
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  3. Sasha

    Sasha Fine, thank you

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    Who is the contact for MEAction? Is it you, @caledonia

    Where are the images going to be held? Are they going to be submitted to stock photo sites?
     
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  4. Nielk

    Nielk

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    Another idea is to contribute spect scan images that show abnormalities.
     
  5. caledonia

    caledonia

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    That's actually Jen Brea. I have that on my list of stuff to do too, but I was thinking the images could either be hosted at one of the major stock photo sites (such as istock.com) or at Wikimedia Commons.

    Istock is good because many major media sources have accounts there and use it frequently. There are even some MS photos there which could also apply to us. Anyone who submits photos can get paid if someone buys them, so it could be a nice source of income for patients. However, the photos do have to go through an acceptance process and I think the standards are pretty high.

    Wikimedia Commons is open source, so they will accept anything. Photos are free for anyone to download and use.

    The main thing on either site is to tag your photos with "myalgic encephalomyelitis" and "M.E.", so people can search and find them.
     
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  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    If we want newspaper people to find the photos, we should probably additionally tag them with whatever the newspaper people will be using as search terms. This might not be the same as our preferences (which we can also use; someone might learn something).

    Probably "chronic fatigue", unfortunately, since that's what they persistently call it in articles. Chronic Fatigue Syndrome, CFS, CFIDS, MEcfs, and SEID are also candidate tags.
     
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  7. caledonia

    caledonia

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    Yes, unfortunately, until the rest of the world catches up with us - all of the above tags mentioned, as well as male or female and anything else that seems relevant to what the media might be looking for.

    On iStock, you can look at the multiple sclerosis images and their tags to get an idea.
     
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  8. CantThink

    CantThink Senior Member

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  9. Misfit Toy

    Misfit Toy Senior Member

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    Has it actually been in the newspaper? I mean I've seen it online on Facebook due to other CFS patients, but is this in the paper? I haven't seen anything in other papers or in the New York Times, or in any of that stuff. It's all having to do with Cort Johnson or other people who advocate ME or CFS. Nothing from the normals or straight up regular journalists.
     
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    yes, even my grandmother mentioned that she saw it in my local paper.

    It's also on yahoo news, CBS, medical news sites, NPR, and yes, David Tuller had a blog at the New York Times. Very good. It was on NBC Nightly News, very poor coverage, but they did post a half-hearted correction to their website.

    Also many other places. There is a thread on media coverage here:
    http://forums.phoenixrising.me/index.php?threads/articles-on-the-release-of-the-iom-report.35453/
     
  11. taniaaust1

    taniaaust1 Senior Member

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    Great idea. I have a heap of my ME hospitalization photos on my phone.. just go to work out how to get them from a very old photo phone to there. (I get bored whenever im in hospital so usually take a few shots whenever Im there).

    They need to see severe ME patients in their wheelchairs and on drips.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Yes, its made news right around the world, even here in at least one Australian newspaper
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    Yes!! So happy! Wish some of my friends had read it. We need more coverage.
     
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  14. Sasha

    Sasha Fine, thank you

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    I'm drafting a static page for Phoenix Rising in which I'd like to offer search terms that a picture desk could use that would produce some appropriate, non-headached/sleepy office-worker pictures.

    Here's iStockPhoto:

    http://www.istockphoto.com/

    Can you help me come up with some search terms (test them on iStock!) that will produce the sort of images we want?

    If you put 'chronic fatigue syndrome' in it comes up with the usual horrors.
     
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  15. Scarecrow

    Scarecrow Revolting Peasant

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    'Myalgic encephalomyelitis' / 'encephalopathy' give nothing on iStock, unsurprisingly, but I assume that these are search terms you would still use?

    'Post exertional malaise', 'PEM' and 'malaise' give rubbish on iStock.

    'Exhaustion' is better than 'chronic fatigue syndrome' but also has a lot of exercise and office worker photos.

    'Bedridden'? Some of these are reasonable.

    I'll stop here before I get my thesaurus out. Am I on the right track?
     
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  16. Sasha

    Sasha Fine, thank you

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    Yes, it's good to know what doesn't work as well as what does so we can all narrow it down together.

    Yes, 'bedridden' is pretty good (I'd tried 'bedbound', which I don't recommend!). Nasty bedsore there!

    Yep, on the right track. I wouldn't use myalgic E'tis/opathy since they don't return anything.

    I want search terms that a journo can ask a busy picture desk to use and that will yield lots of good stuff, fast.

    'Wheelchair user' is a good one.
     
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  17. Effi

    Effi Senior Member

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    - 'sick' or 'ill'/'illness' have a few somewhat usable pics (although most include kleenex and runny noses ;))
    - 'exhausted' seems to be a good one (although so many of these exhausted people are sitting up straight. lay down people! you'll feel a bit better! lol)
    - 'bedridden' gives many of the same results as 'sick' but a few different ones too
    - ok don't laugh, I typed in 'lonely in bed' and a few good ones popped up!
    - weirdly, 'insomnia' might be the best one so far...

    I found out encephalitis and encephalopathy were actually standard search terms. But nothing came out of it, just brain scans and random biology blobs. Fibromyalgia gives you endless pictures of muscles, and one woman in different poses of muscle pain (oo, aa). Lyme disease gives you heaps of ticks and bulls eye rashes. Chronic Lyme or Late Stage Lyme 'doesn't exist'.
     
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  18. Sasha

    Sasha Fine, thank you

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    Thanks, effi, I'll take a look. It's possible to combine terms. I'm trying 'exhausted sofa' and getting some not bad ones.

    'Insomnia' - interesting.

    I think it would be OK to specify search terms and then add some instructions (such as 'but no-one blowing their nose').
     
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  19. Effi

    Effi Senior Member

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    haha @Sasha that made me laugh, picturing a sofa that feels as exhausted as me! ;)

    'insomnia exhausted' also works
     
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  20. Nielk

    Nielk

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    'very ill patient' comes up with some good ones.
     
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