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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 }

  • Dolphin March 23, 2016, 3:19 pm

    I've been involved in organising a lot of ME/CFS media coverage over the last 20 years.
    In my experience, a big reason reason why stock photos are used is when the patient (or carer/caregiver) won't be photographed or submit a photograph.

  • panckage March 23, 2016, 3:31 pm

    Thanks for bringing this up Sasha. It is also our responsibility to alert reporters/writers to the presence of pictures (as Sasha did) that better qualify our illness. We have to make it easy for these people to support us. It is important for our health to be helpful Harriets, rather than negative Nancies!

    edit: Cort -> Sasha

  • panckage March 23, 2016, 3:55 pm
    Sasha

    :whistle:

    Sorry about that Sasha. I read about it and posted here: http://phoenixrising.me/archives/27244
    I just assumed it was Cort. I edited the above post 😀

  • Sasha March 23, 2016, 4:01 pm
    panckage

    Sorry about that Sasha. I read about it and posted here: http://phoenixrising.me/archives/27244
    I just assumed it was Cort. I edited the above post 😀

    No probs! Cort hasn't written articles for Phoenix Rising for over three years now, though, when he left PR and set up Health Rising (where he writes most of the articles). 😎

  • JaimeS March 23, 2016, 4:15 pm

    This is great work, guys. One of the companies I freelance with uses Shutterstock as their main source of images, so this should be very helpful. :)

  • Old Bones March 23, 2016, 4:27 pm

    @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.

  • Never Give Up March 23, 2016, 4:30 pm

    Nice work! The photos are much better than the usual ones. They are missing "that look" though, probably because the models don't have ME. Much better!

  • Sasha March 23, 2016, 4:36 pm
    Old Bones

    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.

    Interesting point! I think most of us may well look perfectly healthy most of the time and the only visible sign of illness is behavioural – having to lie down, for example.

    But to tell a story about an illness in a newspaper, if it's not showing a particular person who the story is about, then it needs to be a generic person, and if that generic person isn't showing the behaviour of a sick person then they're just a generic person looking normal and there's no point having a picture.

    So I think having the bed/sofa/wheelchair pictures is the best we can do – while you make a very good point that it's not a 100% perfect solution.

    I hope that one day we'll get to the point where people understand the issues with "invisible" illnesses but we're not there yet.

  • Snow Leopard March 23, 2016, 4:58 pm

    This is an excellent idea Sasha!

  • Old Bones March 23, 2016, 5:11 pm
    Never Give Up

    They are missing "that look" though, probably because the models don't have ME.

    I took a closer look at the photos. You're right. They are missing "that look". And, how many of us are as consistently beautiful as the models chosen to portray the ill/fatigued women? The representations of the men were much more believable. But, I guess that's typical in a society that still often judges women more on how they look, rather than who they are.

  • Sasha March 23, 2016, 5:23 pm
    Old Bones

    I took a closer look at the photos. You're right. They are missing "that look". And, how many of us are as consistently beautiful as the models chosen to portray the ill/fatigued women? The representations of the men were much more believable. But, I guess that's typical in a society that still often judges women more on how they look, rather than who they are.

    If you look on Shutterstock and search on "drug addiction" (the epitome of unglamouressness, you would think), the people are still fairly beautiful! Though I notice they've got big, dark shadows under their eyes (probably make-up!). It's just the nature of who goes into the photographic-model business, I suppose.

  • SB_1108 March 23, 2016, 5:58 pm
    Dolphin

    I've been involved in organising a lot of ME/CFS media coverage over the last 20 years.
    In my experience, a big reason reason why stock photos are used is when the patient (or carer/caregiver) won't be photographed or submit a photograph.

    I have a million ideas for this but I have no interest in being the face of ME/CFS.

    If anyone else is so inclined to have a professional photoshoot, you could take pictures:

    • Crawling up the stairs or across the floor
    • Having someone else dry your hair while you lay on the bed face down
    • Having someone else feed you while you are laying down
    • Having someone bathe you or help you get dressed (PG-version obviously)
    • Having someone help you walk or into your wheelchair
    • Just a picture to depict loneliness and isolation
  • Esther12 March 23, 2016, 6:23 pm

    [​IMG]

  • SB_1108 March 23, 2016, 6:51 pm

    @Esther12 – I felt like my post was depressing so I'm glad you brought some happiness back to the thread with that image! 😀

  • jamie March 23, 2016, 10:18 pm

    http://i4.mirror.co.uk/incoming/article5312151.ece/ALTERNATES/s615/Kate-Middleton.jpg

    i don't know how to get this up but definitely thought of this as perfect to depict the world and government's reaction to us. It's not stock photo but it's perfect.

    I have looked both great and heathy and grotesque and pathetic during different times yet there is always something in the eyes that you recognize in your own pictures and and in other sufferers. Laura Hillenbran is beautiful and put together during press yet you see her eyes have that ME thing happening that no one else would notice.

    I was amazed when I went to Peterson's clinic that around town I could spot the patients by their eyes. I had never met another patient before and it was like meeting a secrect club.

  • wastwater March 23, 2016, 10:36 pm

    I always liked the cartoon one that showed someone dripping over a desk.
    I remember seeing a page in a hiking magazine called faces of fatigue where people would send In pics after a 12 mile hike they looked ME ish.
    I have to hold my face together try not to grimmace and can't hide the panda eyes when having my pic taken.
    that scene in Robocop where he's in pain with helmet removed may also be appropriate
    feel like my immune systems giving me a lobotomy

  • Sasha March 24, 2016, 3:09 am
    SB_1108

    I have a million ideas for this but I have no interest in being the face of ME/CFS.

    If anyone else is so inclined to have a professional photoshoot, you could take pictures:

    • Crawling up the stairs or across the floor
    • Having someone else dry your hair while you lay on the bed face down
    • Having someone else feed you while you are laying down
    • Having someone bathe you or help you get dressed (PG-version obviously)
    • Having someone help you walk or into your wheelchair
    • Just a picture to depict loneliness and isolation

    These are very good ideas for picture content but unless the article is about a particular person, I don't think the media will use an image of a particular person; and if one PWME has a load of photos done, I think the media will avoid using a picture of the same person over and over.

    @Old Bones raised the issue of attractiveness earlier and in the weird and shallow world of the media, I do wonder whether you need to be attractive (even in your decrepitude) to be a photo model for this sort of thing (they wouldn't have me!).

    I think these would be good ideas for a team of models, though. You can find, in stock photography, images for "help feeding", for example, but they show the very elderly, rather than young/middle-aged patients. On the other hand, you can find loads of images for loneliness.

    A major problem is with the keywords. Type in "chronic fatigue syndrome" and you get rubbish. Type in "depression" and you get a lot of stuff that's actually quite useful for us, but picture-desk editors aren't going to type that in – they're going to type in "chronic fatigue syndrome" or "myalgic encephalomyelitis" and that's going to fail – and then they'll type in "chronic fatigue" and that's where we get all those sleepy office-workers.

  • Sean March 24, 2016, 3:46 am
    wastwater

    I always liked the cartoon one that showed someone dripping over a desk.

    This Robert Crumb cartoon?

    [​IMG]

  • Simon March 24, 2016, 4:06 am

    Re drawings/cartoons, I love these which sum up 'exhausted' for me.

    I doubt they'd get used (though can be freely reproduced, with attribution) but I'd rather see one of these than most of the stock pics that appear in newspapers
    [​IMG]
    exhausted pose drawings by JoeyGates on DeviantArt

  • Sasha March 24, 2016, 4:12 am

    Great poses but newspapers don't use drawings for these sorts of articles. We've got to adapt our strategy to their normal way of working – that way, we'll have the best chance of success.

  • snowathlete March 24, 2016, 4:27 am

    Thanks Sasha for writing about this, you're spot on, of course.
    Great to have some appropriate images to point journalists to.

  • greeneagledown March 24, 2016, 6:26 am

    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.

  • Sasha March 24, 2016, 6:54 am
    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.

    Yikes, really not my intention but I see how it could be read that way. My intent there was to contrast the sort of images that PWME have been getting in the media with those that PWMS or cancer get. The generic MS or cancer patient isn't generally shown at the office – they're shown in a context that makes it clear that their problem is serious. The conclusion isn't drawn from that that people with those conditions who are more functional aren't sick, just as it shouldn't be for us – rather, the person looking really sick is seen as an exemplar of the condition at its near-worst. It's the same with how the media illustrate an article on climate change – you show how far the polar ice has retreated, not a snowball melting in Swindon.

    I completely agree with you that there's a lot of nonsense written by patients on forums (including these, sometimes) that if you have mild ME, you don't have ME at all. It's such a bizarre thing to say. I can't understand the logic at all.

  • Sasha March 24, 2016, 6:55 am
    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.

    But now that you've pointed this out, it's bugging me and I don't want it misunderstood. If you'll bear with me, I'll see if I can make an edit (I don't have full edit access to everything so it's not straightforward or quick).

    Thanks for raising this!

  • Sasha March 24, 2016, 7:09 am

    @greeneagledown (or indeed, anybody) – I've edited the photo page itself. Does it read OK to you?

    http://phoenixrising.me/stock-photography

    I've put in for an edit to the front page and the forum version but it will take a while to process.

    Thanks again!

  • Old Bones March 24, 2016, 7:18 am
    jamie

    I have looked both great and heathy and grotesque and pathetic during different times yet there is always something in the eyes that you recognize in your own pictures and and in other sufferers.

    Yes, something in the eyes . . . that "glassy, bleary, spaced-out" look. I know when I have it while away from home, despite no mirrors to confirm it, by the way strangers (eg. cashiers) look at me. They slyly do a "double take", followed by a quizzical, suspicious and uncomfortable glance away. I realize they know there is something "off" about me.

  • u&iraok March 24, 2016, 7:46 am

    I recognize that 'something in the eyes' of ME sufferers but I don't think the general public always does. I have mild ME yet I can look bad enough to get stares from people ( I used to wonder why people, especially friends, gave me 'dirty' looks and was hurt by it 'till I figured it out), but I think the real issue is getting people to accept the fact that you don't have to look sick to be sick.

    If you use someone who looks sick in the photo then people who don't look sick may have a harder time being taken seriously.

  • waiting March 24, 2016, 7:47 am

    The idea I think works well is what @jspotila did a couple of years ago — she had a *before acivity* and *after activity* photo of herself that shows the effects of PEM.

    The pics are on her blog, although of course she'd have to be asked for permission. Or maybe someone has access to models (for anonymity) that could depict the before & after.

  • greeneagledown March 24, 2016, 7:47 am
    Sasha

    @greeneagledown (or indeed, anybody) – I've edited the photo page itself. Does it read OK to you?

    http://phoenixrising.me/stock-photography

    I've put in for an edit to the front page and the forum version but it will take a while to process.

    Thanks again!

    Thanks. I thought that probably wasn't your intention. It's all good.

    We cool.

  • Sasha March 24, 2016, 8:04 am
    waiting

    The idea I think works well is what @jspotila did a couple of years ago — she had a *before acivity* and *after activity* photo of herself that shows the effects of PEM.

    The pics are on her blog, although of course she'd have to be asked for permission. Or maybe someone has access to models (for anonymity) that could depict the before & after.

    That's a very interesting idea. Again, a photo of a real person wouldn't be used by the media to illustrate a general article – that's really not how it works – so a photo of Jennie would only be used in an article about Jennie.

    But there's no reason why a model couldn't be used (with Photoshop, if necessary). Not sure how much mileage this idea would have in general but I think a one-off use could be powerful. I think it would be odd if lots of articles about ME had before/after shots – because again, that's not normal for the media.

    I think the best we can hope for right now is to get ME represented as a condition that's as disabling, at its worst, as other conditions that are, at their worst, also very disabling.

    But in the near future, maybe we can get some pictures of brains! Such as in this article about MS. That would get around the "invisible illness" issues and would help ram home the notion that this is an organic disease.

  • Old Bones March 24, 2016, 9:49 am
    Sasha

    But in the near future, maybe we can get some pictures of brains! Such as in this article about MS. That would get around the "invisible illness" issues and would help ram home the notion that this is an organic disease.

    I don't know if any pictures of actual brains are currently available, but here are a few links to photos of brain scans (SPECT and MRI):

    http://www.name-us.org/ResearchPages/ResNeuro.htm (particularly interesting — the Negative Effects of Exercise on a M.E./CFS Dysfunctional Brain)

    http://www.today.com/health/chronic-fatigue-real-new-brain-scans-show-1D80250083 (Not just lazy: Chronic fatigue is real, new brain scans show)

    https://www.google.ca/search?q=stan…KHaH4B3oQ_AUIBygC&dpr=1#imgrc=rHDoOIB-5HAhRM:

    http://www.meresearch.org.uk/news/brain-abnormalities-in-mecfs/

  • Sasha March 24, 2016, 10:00 am
    Old Bones

    I don't know if any pictures of actual brains are currently available, but here are a few links to photos of brain scans (SPECT and MRI):

    I meant brain scans – and those are some nice finds.

  • Valentijn March 24, 2016, 11:01 am
    Sasha

    These are very good ideas for picture content but unless the article is about a particular person, I don't think the media will use an image of a particular person; and if one PWME has a load of photos done, I think the media will avoid using a picture of the same person over and over.

    Do you think it would be possible to have a professional shoot with models, maybe funded by ME charities and/or individual donations? There could be some real ME patients on the set to demonstrate the "look" for the models, and ensure things are going in the right direction regarding poses, make-up, hair, etc.

  • Valentijn March 24, 2016, 11:22 am

    I'm loving the photos. Even with too much make-up and with attractive models, those ones do a good job of looking pained, listless, exhausted, etc.

    One link doesn't work: MB#5

  • Sasha March 24, 2016, 11:25 am
    Valentijn

    Do you think it would be possible to have a professional shoot with models, maybe funded by ME charities and/or individual donations? There could be some real ME patients on the set to demonstrate the "look" for the models, and ensure things are going in the right direction regarding poses, make-up, hair, etc.

    Lots of interesting ideas are coming up. In order to direct our efforts at the best idea, I think it would be great to get the advice from a picture-desk editor about what our best play(s) would be. The issue may not be the lack of suitable pix but the problem in finding them. If you type "multiple sclerosis" into Shutterstock you get a bunch of youngish people in wheelchairs, which is appropriate (you don't want the elderly in wheelchairs unless you're illustrating a story about disability in the elderly, generally speaking). They don't look particularly "MS-ish" (whatever that may look like) – which is appropriate because they're clearly playing a role, not pretending to be actual patients.

    To find the pix I found, I ended up using search terms such as "depression", "bed" and so on. I think we need to know how picture editors approach their first search and maybe try to get existing pix tagged accordingly (I'm not volunteering to do this!). I think that would be a matter of contacting the copyright-holders of the pix and suggesting it (as a means of expanding their market).

    But your idea would have the advantage of potentially making a bit of a media splash in and of itself, which would help raise awareness directly.

    @viggster, do you know any picture-desk editors? What do you think they'd suggest we do, to avoid the "sleepy office-worker" pix?

  • Sasha March 24, 2016, 11:26 am
    Valentijn

    One link doesn't work: MB#5

    Thanks – sometimes pix get withdrawn from the libraries. I'll delete that one.

  • viggster March 24, 2016, 2:26 pm
    Sasha

    Lots of interesting ideas are coming up. In order to direct our efforts at the best idea, I think it would be great to get the advice from a picture-desk editor about what our best play(s) would be. The issue may not be the lack of suitable pix but the problem in finding them. If you type "multiple sclerosis" into Shutterstock you get a bunch of youngish people in wheelchairs, which is appropriate (you don't want the elderly in wheelchairs unless you're illustrating a story about disability in the elderly, generally speaking). They don't look particularly "MS-ish" (whatever that may look like) – which is appropriate because they're clearly playing a role, not pretending to be actual patients.

    To find the pix I found, I ended up using search terms such as "depression", "bed" and so on. I think we need to know how picture editors approach their first search and maybe try to get existing pix tagged accordingly (I'm not volunteering to do this!). I think that would be a matter of contacting the copyright-holders of the pix and suggesting it (as a means of expanding their market).

    But your idea would have the advantage of potentially making a bit of a media splash in and of itself, which would help raise awareness directly.

    @viggster, do you know any picture-desk editors? What do you think they'd suggest we do, to avoid the "sleepy office-worker" pix?

    Those lame photos of sleepy people are from stock photo agencies and they're tagged with the word "fatigue". That's how they're found.

  • Sasha March 24, 2016, 2:44 pm
    viggster

    Those lame photos of sleepy people are from stock photo agencies and they're tagged with the word "fatigue". That's how they're found.

    That's why I'm wondering how picture-desk editors would advise us to improve matters. Do they start out with "chronic fatigue syndrome" and then go to "fatigue" when that fails? Are they just going to keep searching on "fatigue" for ever? Is it going to take a name-change for the disease before we see this change? Is there any point trying to raise awareness among them, given the multitude of outlets? If our disease gets a different name(s), then what? How do we get stock library photographers to start using the tags?

    I can't help but think that picture editors would have some helpful insights into what we can best do.

    I've noticed this past year that there's been a big improvement in the media in the pix that are being used and I'm wondering how that's been happening – whether it's down to contributors trying to have an input.

  • jamie March 24, 2016, 3:43 pm

    Not that this isn't complicated enough but I thought I'd bring up the fact that for so many the brain disfunction is worse than the "fatigue". Funny, I actually miss real fatuige as I remember it. It was a pleasant feeling at times and I haven't felt it since I got "Chronic Fatigue".

    Anyway… how wold you depict in a photo of the confusion, head spinning, delayed thought process, loss of ability to learn simple things or do basic math while still able to seem normal?

    When I was still "working" which was a joke I showed up sat at a computer and tried to do what I could but a 12 year old could have done a better job. It was like I was an illiterate person in certain ways trying to hide it. But on the other hand I could talk about philosophy, joke around, discuss politics and religion with the best of them at good times.

    Such a weird spectrum odd symptoms not easily boiled down to what most people can comprehend let alone shown in a picture.

    I'm not criticizing at all, I don't think what I'm talking about is really possible but it's getting really frustrating the emphasis on fatigue only at he NIH and the public that I thought I'd throw it out there.

  • CFS_for_19_years March 24, 2016, 3:55 pm

    https://www.instagram.com/cfsselfies/

    Posted here by Never Give Up: http://forums.phoenixrising.me/inde…good-days-bad-days-photos-on-instagram.39926/

    Also see https://twitter.com/CFSSELFIES

  • Sasha March 24, 2016, 4:02 pm
    CFS_for_19_years

    https://www.instagram.com/cfsselfies/

    Posted here by Never Give Up: http://forums.phoenixrising.me/inde…good-days-bad-days-photos-on-instagram.39926/

    Also see https://twitter.com/CFSSELFIES

    I think we've just got to be aware that that kind of thing isn't going to end up illustrating a general news article about ME/CFS in the mainstream media. But it's the sort of thing that charities can use.

  • jamie March 24, 2016, 4:30 pm

    They use images like this for Alzheimer's. Headline "It's Not Just Fatigue…"

    View attachment 15147

  • Sasha March 24, 2016, 4:53 pm
    jamie

    They use images like this for Alzheimer's. Headline "It's Not Just Fatigue…"

    View attachment 15147

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

  • jamie March 24, 2016, 6:06 pm
    Sasha

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

    I'm thinking more regular magazines, I don't read science mags but see images like this or the one Simon posted often enough. Maybe The Atlantic or The New Yorker off the top of my head? More in depth articles. But I see your point that the mass media and their standard use of photos is most important,

  • u&iraok March 25, 2016, 9:06 am
    jamie

    Not that this isn't complicated enough but I thought I'd bring up the fact that for so many the brain disfunction is worse than the "fatigue". Funny, I actually miss real fatuige as I remember it. It was a pleasant feeling at times and I haven't felt it since I got "Chronic Fatigue".

    A lot of people say that. I agree. I walked around wired and anxious for months until I took supplements for the serotonin and gaba neurotransmitters and was happy to have fatigue again, lol. How would you show the brain issues, wow–if you thought showing fatigue was hard…back to holding the head and grimacing. I really like the Alzheimer's tree losing it's leaves, though.

  • Sasha March 25, 2016, 10:02 am
    u&iraok

    A lot of people say that. I agree. I walked around wired and anxious for months until I took supplements for the serotonin and gaba neurotransmitters and was happy to have fatigue again, lol. How would you show the brain issues, wow–if you thought showing fatigue was hard…back to holding the head and grimacing. I really like the Alzheimer's tree losing it's leaves, though.

    I don't think it's possible to show a whole ton of issues in a single photo/illustration and anyway, it's not the job of a photo to carry the whole weight of getting across what the disease is. I don't think we should worry too much about perfection – just getting away from the sleepy office workers and to people in wheelchairs or in bed would get us in line with MS, for instance, and would be much more appropriate and consciousness-raising.

  • Asa March 25, 2016, 5:53 pm

    Should it be helpful (and not thus far mentioned), the following thread, post #11 has photo info/resources for US gov health agencies/library: http://forums.phoenixrising.me/index.php?threads/visual-representations-me-cfs-cfids-seid-etc.38259/

    The newsroom image library is home to the images journalists request most often. These high-resolution, public domain images are ready to print in your publication.

    For images not available in this library, visit the Public Health Image Library (PHIL) We also recommend the National Library of Medicine image library….

    The Public Health Image Library (PHIL) offers an organized, universal electronic gateway to CDC’s pictures. We welcome public health professionals, the media, laboratory scientists, educators, students, and the worldwide public to use this material for reference, teaching, presentation, and public health messages. The content is organized into hierarchical categories of people, places, and science, and is presented as single images, image sets, and multimedia files.

    EDIT: And with the idea of what ME looks like… I'm on the verge of "passed done" today, and am overall experiencing a relapse, meaning I get hit harder sooner longer. And when I get "hit", it's written all over my face. And so I've long wondered if facial muscles/expressions could be used as any sort of measurement tool for people with ME to, for example, provide info for level of severity. I look "drained" if I walk too long, if I talk too much, if I read too much, etc. The look eventually appears in response to "physcial" or "cognitive" exertion.

    Anyone know anything about this? Have any ideas?

    A superficial search "facial muscles fatigue" yielded this 1995 (non-ME) study: http://www.ncbi.nlm.nih.gov/pubmed/7487428

    With the conclusion (in part): "Knowing the amount of facial muscle fatigue of individuals without impairment can be beneficial in developing outcome measures and goals for rehabilitation of individuals with facial neuromuscular dysfunction. Changes in fatigue tests of an individual with facial neuromuscular dysfunction with rehabilitation is reviewed for comparison."

    Why can't people with ME's facial muscle fatigue be measured before/after tasks? And over longer periods (weeks/months) too to collect info of individuals' peaks/valleys? Is this data we could measure/collect ourselves?

    Sorry, Sasha if this is too off topic! (I'm currently too pooped to post elsewhere, but can eventually! :))

  • Old Bones March 25, 2016, 6:50 pm
    Asa

    And with the idea of what ME looks like . . . . when I get "hit", it's written all over my face. I look "drained" if I walk too long, if I talk too much, if I read too much, etc. The look eventually appears in response to "physcial" or "cognitive" exertion.

    @Asa Like you, overdoing it is "written all over my face". Last evening was a perfect example. I watched Dr. Bell's video (almost an hour), and did one PR post — both while lying in bed. Afterwards, my husband commented on my appearance. My face was red and puffy, my eyelids swollen, with the right eyelid drooping almost shut. The left more-open eye was red, glassy and watery. I'd be embarrassed to have anyone in the outside world see me looking that bad.

  • rosie26 March 26, 2016, 1:02 am

    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.

  • taniaaust1 March 26, 2016, 1:51 am

    I too think they need to start focusing on portraying severe sufferers in photography. When you see cancer articles you generally see a person who looks like someone with cancer with the pictureusually bald or with hair growing back (even if with most cancer sufferers you cant tell to look at them).

    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.

    I think there should be a "real" stock of ME/CFS photos which media have permission to use or have been put together to represent this illness eg a huge box of of a ME patients medication and supplements to represent our search to try to get our health better..

    I have a photo of me somewhere, all dolled up, I think I had make up on and I'd done my hair bright colours for a happy occasion but I still carried the ME eyes… the photo a contrast of happiness but hauntedness..