A survey is looking at how the media depicts a debilitating chronic illness. It is asking people living with the disease known as myalgic encephalomyelitis – commonly referred to as ME – their carers, and advocates to give feedback on imagery the media uses when reporting on it. But if you wish to take part, you don’t have long – the survey closes on Sunday 20 February.
Peter White and Simon McGrath both live with ME and are the authors of the survey. The pair have organised the survey as part of the coalition group Forward-ME which represents a number of UK charities and campaign groups.
ME: a debilitating disease
ME, is a chronic systemic neuroimmune disease. The latest research says it affects at least 65 million people worldwide and around 250,000 people in the UK. But these numbers could be underestimates. Some research puts the number of undiagnosed ME cases at 80%. Meanwhile, other studies show a prevalence rate in the population between 0.2% and 3.48%.
While symptoms vary for every person, people living with ME often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. This is called post-exertional malaise (PEM).
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance / problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
A shared experience of ME
White’s experience of the disease may sound familiar to a lot of people. He told The Canary:
After a “probable virus” my GP advised me to rest it out. After three months I felt more or less recovered and active. But three months after that the weird fatigue set in. It was unlike anything I had felt before, and it gradually got worse. It was disabling, and has stopped me from being able to work full time since then. However I am also fortunate that my symptoms are far milder than others.
So, White has a personal investment in his work.
White and McGrath have also set up a dedicated Twitter account for this called A Picture of ME. You can follow it here.
White told The Canary:
As we are trying to increase media coverage of ME, we have had some success. But we have seen many comments within the ME community on social media saying that images are not representative of their lived experiences. We know images are important. It is cliché to say that a picture paints a thousand words. But there is also a lot of truth in that.
We have to ensure that the issue is more than just anecdotal. We have to ensure that it is a widely held view, before trying to do something to improve the situation.
So before we think about how to resolve the issue, we have to see if there is an issue. And that is why we are holding this survey.
The survey states that it:
aims to understand if photos attached to news stories about ME […] are good or bad representations of the disease.
We will use the results to help the media improve representation of people with ME.
It is qualitative with open questions. This means that White and McGrath’s own views are not influencing the results. They will use the results to, as the survey states, “improve comms for Forward-ME”. You can complete the survey here.
So, how does the corporate media depict the disease in its imagery?
The survey gives examples, like the ones below:
Some people have already made their feelings clear on Twitter. For example, as Aineemac said:
I swear they must look for stock images of stress, tiredness or headache. If someone took a photo of me last week on ambulance stretcher, with entinox & dark prescription glasses just to get tests done – it’d show reality. Or lying in my hospital bed in darkned room with 2 carers
White hopes that the survey will get a rounded picture of people’s views. He told The Canary:
We hope that this will either tell us that “all is OK” at which point we will move on to other things, or maybe that there is some disconnect, at which point we will see where we might make improvements.
A much needed insight
ME has been fraught with controversy and medical neglect. Some conduct by parts of the medical establishment relating to ME could be seen as corrupt and subversive. Medical professionals, at times backed-up by the media, have disbelieved and stigmatised people living with ME, given them incorrect treatment or told them it’s ‘all in their heads’. So, as White summed up to The Canary:
I believe that ME suffers from the same blocks as other civil rights battles: stigma, lack of belief, invisibility. It has so much in common with the civil rights movements and social justice fights. It is not, sadly, just about health.
The survey about media imagery forms part of this. The world needs to see the reality of ME. Otherwise, it will be a struggle to improve conditions for people living with it.
Featured image via A Picture of ME
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