Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?, 2021, McMillan et al [and 2022 update]

I've mentioned the idea of asking people to provide their own photos earlier in this thread and also that while it is a great idea, the people in my (still relatively small) group tend to be on the passive side and have never really participated in such projects when I had similar ideas before despite liking the idea. (This is probably the same reason why no one else has ever advocated for ME/CFS here or why even long haulers don't have advocates, except for one person who is at least trying. It is just how things here are unfortunately.)

The pictures are not for esthetic purposes. It is because of the Facebook algorithm, many people will just scroll over a simple text post (yes, even many pwME), which in turn tells Facebook that the post is uninteresting and it shouldn't show it to more people. Currently FB only shows your post to an extremely low number of your page followers, unless the post gets a lot of interest (it is their business model - if you pay, then more will see it). My posts usually don't gather such level of interest, because I'm still a small page, with mostly research and advocacy news and plain text posts (compare that to a page with cute dog photos or political issues and I've already lost and most of my followers, even the interested ones will never see what is currently going on with the NICE guideline or long covid for example). The FB algorithm sucks and unfortunately I have to trick it somehow, which is a constant struggle. (Currently I have to pay FB to show my posts to more of my own followers.)

Of course, I wouldn't use visually very loud photos, that was never the goal in any way.

Edit: and of course a link with the thumbnail of an image gets more interest, which would be the case for me when sharing an article from the website.

I know what you mean @Wyva about so few advocates. In my experience, politicians rarely hear from ME advocates. There are so few, they are sick, and trying, on top of ME advocacy to keep some semblance of household going, maybe some engagement with friends and family etc., etc.

Some close to pwME also advocate, but there again as we know, they are often employed, and may use a lot of their off work hours for caregiving.
 
My answer to this is that people in the early stages of fatal diseases often don't look sick either.

My aunt died of pancreatic cancer with the common 4 months from diagnosis to death. For over three of those months she looked marvellous. Her granddaughter fixed her hair and gave her clothes to wear since she had lost so much weight. No chemo, no hair loss.

It is all just prejudice born of ignorance.
 
I remember a conversation I had way back with AfME about their use of stock photos, and the artificial image that was portrayed. Their argument, which I can understand, is that it is very hard to get hold of good quality real photos. Most of the photos that people provide of themselves are of fairly poor quality.
The only question they should be asking is whether the images are representative
 
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