Improving images used to depict ME/CFS

But this is by design, not unintentional. Even charities willingly participate in it coz apparently it's been shown that people will give more if they can "empathise" or are at the very least not disgusted by images. The truth simply wouldn't raise as much money, at least in the opinion of those commissioning such things.

I don't like it, I think it's dishonest, but dishonesty seems to be the way things work these days.

 

Merged thread: 'A database/website for ME images'

With the recent media attention regarding the Pariante article, @TiredSam brought up the issue of images of ME/CFS. These are mostly yawning models with make up on, not a true reflection of the suffering ME/CFS causes. A lot of people do not read the article but just look at the title and images as they scroll through their news feed. So I think this is quite an important issue. If we want the public opinion to take ME seriously, the pictures have got to change.

I was thinking it might be a good idea to create a database/website of high quality but realistic pictures of people with ME. We could start by asking the major ME charities around the world to add the images they already possess and use. By grouping these in one place we could provide journalists with an easy alternative for picturing ME/CFS. It would become very easy to criticize a news outlet when they use stereotyping images of ME if we had such a database - one that could be used all around the world by ME-advocates. We could also organize the website/database into different sections such as severe, moderate or mild ME, young people with ME etc. If anyone, anywhere would want to make a presentation or awareness project about ME, they would be able to use these high quality picture.

Unfortunately I do not possess the skills (programming, photography, connections to ME charities etc.) to do this but maybe we have some in our community who used to be webdesigner or photographer who are willing to take up this project?

I think it could make a difference.

 

The ME Association started a real images effort here:

https://www.meassociation.org.uk/20...ion-real-m-e-photo-campaign-05-february-2018/

I'm not sure how successful it has been to date, but @Russell Fleming may be able to say more.

 

I'm pretty sure ME Action started a project on this years ago but don't know what happened.

*searches*

I found this link https://www.meaction.net/2015/04/12/retire-this-stock-photo/

but didn't know how to see the submitted photos. Eventually I figured out that I should click on the submit button and found this:

https://www.flickr.com/groups/meaction/pool/

There are also many photos from ME Action protests (including "virtual"/private protests) online:

https://meaction.smugmug.com/

However,

1) I don't know what the rules are for using these photos

and

2) I don't know whether these kind of photos are what @Michiel Tack was looking for

Anyway, I hope this helps a bit.

 

Hi
We have over 250 photos kindly forwarded by people with M.E. for the Real M.E. Campaign, accompanied by personal stories and some video. We were able to use many of the images on our website and social media, and during MEAW in particular. Also, the photo's led to permissions for stories to be told to the news media and for features on M.E. to appear during the year. Next year we are hoping to extend the campaign and make Real M.E. a focus for MEAW 2019.

 

Thats great! Thanks for responding for ME Association @Russell Fleming ! Other major charities such as Solve ME/CFS and ME action UK have responded that they also have a set of pictures on working on this issue.

https://twitter.com/user/status/1075832322987966464


https://twitter.com/user/status/1075862721097285634


What do you think of a website where pictures speficially suited for media outlets are grouped? We could organise them according to theme: severe ME, moderate ME, advocacy pictures, children with ME etc.

That would enable ME advocates around the world to use high quality pictures of ME. For example if an article in France, Belgium or Germany (countries without a strong charity) appears on ME/CFS with a stereotyping image, then ME patients could respond and ask the media outlet to use the images from the databank. During the recent media attention for the Pariante paper, a lot of ME patients were unsatisfied with the pictures in the articles. But they could only criticize it without offering an alternative... With a website/database where the major charities and individuals can submit pictures of ME/CFS for media use, we could make things a lot easier for journalists and strenghten our advocacy.

I have to say that I do not have the skills to make it happen, so it's kind of easy for me to say without actually doing something about it...
So I guess I'm mostly looking for people who do have the skills (webdesign, programming, photography etc.) to make it happen.

 

Pinterest makes uploading images and putting them in specific folders very easy.

What would need to be checked:
- Whether images get compressed when uploaded so that some quality is lost (they would still be suitable for online publications but print outlets need high quality images)
- Whether you can set it that anybody can upload (I think you may be able to do this, but I'm rusty on the rules)

Aside: I have thousands of images on my Pinterest account https://www.pinterest.ie/tomkindlon/, though most are not photos, and even the photos don't have the relevant permissions.

 

Thanks Tom. Impressive collection of ME images you have there on Pinterest.

These seem to be the major obstacles:

1. The pictures have got to be high quality and suitable for news outlets. That often means they have to be taken by a professional photographer or somebody with better equipment than an Iphone. They also have to be somewhat artistic or attractive to the eye.
2. Privacy issues: charities have many pictures of patients with ME but because of consent laws, copyright, and privacy issues these cannot be easily distributed. So I think we will need new pictures of patients with ME who are ok with their picture being a stock image.

One option I see is to ask ME advocates if they could get their picture taken by a photographer or a friend with adequate equipment and skill. This could be while lying in their bed in the dark or outside in a wheelchair with thick clothes in the summer, wearing earplugs and sunglasses or anything else that pictures life with ME. I don't think we need that many images to get the project going.

Don't know yet if this is a realistic option. Gonna keep asking around and see what others think...

 

Thanks

I think in many scenarios a photo taken by an iPhone/similar would be considered okay once the file size/dpi count was sufficient. I've been involved in a number of situations for ME interviews where patients could submit photos and the media outlet just wanted a large file/good quality photo (I can't remember the specifics, but generally it's better to aim for over, say, 1 MB).

 

Could it be possible to lobby directly towards Getty, Shutterstock etc? News articles about ME are increasing internationally, and chances are good that if they tag pictures "ME", "CFS" news agencies will use them and buy licenses for the pictures. Perhaps a request with a very short introduction to ME and symptoms and examples of pictures describing the condition?

 

I worked on this (tidying up the links and uploading, with Bob's help) at the other place: https://phoenixrising.me/stock-photography

The file I produced is quoted below (with additional links I found that don't seem to have made it into the online version):

I guess the task is that these images need proper curation and to be constantly updated, so having a repository would be useful.

 

Looks like I erred when commenting above. We actually have well over 300 images now. This year has been so busy, I really haven't had time to properly do them justice although I have tried. I do think that everyone who has sent us their photos is incredibly brave and we're very grateful.

We have permission to use the images on our website, social media (and magazine) to help promote M.E. awareness and really to demonstrate that M.E. can affect people of any age and from all walks of life. Some of the images also demonstrate the invisible nature of the disease, while others provide a glimpse of life for the more severely affected.

Should we want to use the images or stories in other contexts, then we have agreed to always seek permission beforehand. I did manage to produce a gallery, taking just one image from each collection for MEAW18 and frequently use them on social media, but we're also working on new initiative for 2019.

When John, our press officer, works on things with the general media, he always offers 'real' photos and case-studies where he can. Unfortunately, the media still often run stories using stock images for expediency I think more so than anything else. We hope next year to make a more concerted effort on this front.

Edit: We're currently recruiting - as you know - for a social media manager and have received a good number of applications in a short space of time. So, next year we'll have more resources in place to better enable such campaigns.

 

Merged thread: 'Royal Photographic Society: The Invisible Illness ME (Part 1): History and Symptomology Oct 2020'

https://rps.org/news/groups/medical/2020/me-part-1/

 

The Invisible Illness ME (Part 2): Multiple Invisibilities

https://rps.org/news/groups/medical/2020/me-part-2/

 

Merged thread

There has been a lot of coverage of ME today with the release of the guidelines and a lot of really crummy photos illustrating articles, each one creating the impression that ME/CFS is a pretty trivial illness.

I know there have been many attempts to tackle it on par in the past, notably the ME Association photo library. Nothing seems to have made an impact yet. My feeling is that it may be time to take a new approach. We probably need to get good quality photos that photo editors want to use into their hands (which most likely means putting them in a stock photo library with the appropriate tax).

But the first that would be to find out what photo editors want/need and what problems they are having at the moment. Otherwise, we might just end up addressing the wrong issue.

Is anyone here is a photo editor or knows a photo editor willing to talk to give some views?

And is anyone interested in working on a project like this? It hasn't actually got off the ground yet so everything is open.

Thanks

 

The usual photos of well dressed office workers who look like they're tired or have a headache aren't great.

Not sure that using photos of very ill patients is good. They show how bad things can get but aren't representative of the average patient who could face increased disbelief because they don't look like the people with feeding tubes.

It also makes us look like we want to persuade others that we are sick. In a sense this is true but isn't the better response to instead focus on demanding that we are believed and taken seriously regardless of what we look like.

People with for example multiple sclerosis and diabetes can look completely normal.

 

I believe MEAction and Solve(?) each have a project underway to build a set of photos that are more appropriate.

 

I agree, the first step needs to be finding out how photo editors search for and use pix.

I think we can produce all the great photos we want but if photo editors won't encounter them via the way they normally search, or those photos aren't what they need, those photos will have no effect.

I think we need to consult photo editors first. The situation reminds me of the whole 'Nothing about me without me' scenario for patients. All these years we've been doing exactly that in relation to photo editors.

So, does anybody know any?