Improving images used to depict ME/CFS

The German ME/CFS Association has now published additional professional press photos. This time of a young person with ME/CFS and her mother/carer. The photos can be used free of charge by journalists worldwide by quoting the photo credits.

The first press photos from last year have been very well received and have been used in many major publications.

- Article about the new press photos (automatic translation): https://www-mecfs-de.translate.goog..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp
- Article in English about all the photos and the terms of use: https://www.mecfs.de/stockphotos/

 
I have been having a fight with myself as to whether to post the following link.
(Depicting ME/CFS with the respect it deserves is so important.)

So I hope I'm not way of the mark in posting this bit of satire/humour here entitled, "Gaslight News" posted by the Chronic Illness Channel:
Enjoy!

 
Merged thread: 'Picturing M.E.'
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Picturing M.E.

published on: September 4, 2025

This blog post looks at how the medical condition M.E. is portrayed in photographs and illustrations that accompany newspaper, magazine and website articles about it. There are suggestions for how to find realistic images, and links to curated collections of images that may be useful. We also share some tips for photographers wishing to contribute relevant images to popular online photo libraries. Finally we take a quick look at resources for visualising data, in the context of M.E.

This post contains the following sections (click to jump down the page to the section you are interested in):

Issues with inaccurate images of M.E. in the media

Reality of life with M.E.

What alternatives are available to journalists, picture editors, bloggers and charities?

Pictures that realistically portray M.E. (includes links to collections/albums of examples)

Licensing info for Unsplash and Istockphoto

Adding images to Unsplash and Istockphoto – links/info about how to contribute your own images

Image request list! The start of a wish list of images I’d like to see more of…

Adding the right words to your image when adding it to image libraries

Using graphics / visualising data about M.E. – featuring CrunchME

Continues at:

 
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The problem for images of ME is that many (most?) of us look completely normal. Many of us have been told by our doctors and others that we look fine. I was told by one GP that I was his healthiest-seeming patient. If you post a picture of someone flopped down listlessly, you can't tell if they have ME or are just hungover, lazy, or whatever. I don't think ME shows up visually in any way.

Maybe the stock image for journalists wanting a photo representing ME is a blank image, with the caption "ME simply doesn't show up visually."
 
The problem for images of ME is that many (most?) of us look completely normal. Many of us have been told by our doctors and others that we look fine. I was told by one GP that I was his healthiest-seeming patient. If you post a picture of someone flopped down listlessly, you can't tell if they have ME or are just hungover, lazy, or whatever. I don't think ME shows up visually in any way.

Maybe the stock image for journalists wanting a photo representing ME is a blank image, with the caption "ME simply doesn't show up visually."
Mostly agree, I have been part of too many advocacy meetings where people discussed how to make patients look sicker fr shoots etc. so that it fits the severity of the illness - I think that's almost as bad/insane as the hand on the forehead women photos. That said, severe and very severe patients sometimes do look very, very sick, but they should not feel pressured to present themselves in any manner uncomfortable to them. And that happens unfortunately. There definitely are better and worse ways to do it and it's certainly worth exploring and working on it more.

I had people of the press asking me if they could come on a day where I look and feel particularly bad (I am very severe) to make photos - I told them to f* themselves. There is in part an obscene and morbid fascination with visualizing suffering, and I think also people way overestimate how much that helps advocacy long-term. It might help short-term sometimes to shock and scare, unfortunately.
 
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The only photos I’m not able to look at myself at the moment, are photos of very severe pwME/CFS being taken care of by their carers.

A photo of someone lying in a dark room doesn’t come close to capture the experience of having to lie there. But showing tasks you’re unable to do yourself or the impact that has on others, does to a larger extent.

Examples off the top of my head:
  • Help with feeding/tube feeding
  • Bathing/cleaning
  • Shaving off hair/beard
  • Preparing medicines
  • Setups of kitchens or other rooms where the equipment needed for caring has taken over
  • Being transported
  • Carers dressed up for occasions while in the room with the very severe
I think @Yann04 created a thread for some photography projects by the very severe a few months ago that captured some moments like that.
 
That said, severe and very severe patients sometimes do look very, very sick,
Yes, but they're indistinguishable from people with severe cancer or other such diseases. Those photos will just be generic for "severely ill people". I can't think of anything specific to ME that is photographable.
 
Maybe we need to sorts of photos you see in articles whose subject matter isn't easily illustrated--often in the case of people ripped off or harmed by pollution. A picture of someone and their family sitting down in a setting that represents them or their community--like their porch or a park bench--and frowning. It may not portray the issue at hand, but it humanizes the people it covers by putting a face to it.
 
Yes, but they're indistinguishable from people with severe cancer or other such diseases. Those photos will just be generic for "severely ill people". I can't think of anything specific to ME that is photographable.
Obviously won’t get 100% specific but someone with eyemask and eardefenders lying still in bed with unmaintained facial hair and stuff getting PEG tube fed is pretty v severe ME specific IMO.
 
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