Please report Myalgic Encephalomyelitis (ME) accurately, responsibly and with care
We are calling on journalists, editors, publishers and visual teams to report on ME responsibly, accurately and compassionately.
For many people, ME is not simply feeling tired, being run-down, or having difficulty getting through a busy day.
For those living with Severe or Very Severe ME, the illness can be profoundly disabling.
Some people are housebound or bedbound and may require assistance with basic activities of daily living. They may experience severe pain, cognitive difficulties, extreme weakness, orthostatic intolerance, and profound sensitivity to light, sound, touch, movement, temperature and smells.
Some people may have very limited or no ability to speak, eat, swallow, read, use screens or tolerate ordinary levels of interaction.
Words matter
Over the years, many people within the ME community have worked hard to improve media reporting of ME.
We have had constructive conversations with journalists about the importance of:
• using accurate and appropriate terminology;
• distinguishing ME from ordinary tiredness or fatigue;
• recognising that ME is a serious complex, chronic medical condition;
explaining post-exertional neuro -immune exhaustion (PENE) rather than simply describing someone as "tired";
• accurately representing the severity and fluctuating nature of the illness;
• reflecting the current biomedical evidence without overstating what is or is not yet known;
• acknowledging the significant gaps in research, treatment and specialist care;
• listening to people with ME and allowing their experiences to be represented accurately;
• and avoiding language that unintentionally reinforces outdated or harmful misconceptions.
Please also consider what is missing from your work
An article can contain technically correct statements and still give a misleading impression if important context is omitted.
For example, an article about someone with Severe ME may describe their exhaustion , their inability to work, or their time spent in bed, while failing to explain why they are unable to do these things.
It may mention that someone "rests all day" without explaining that rest may be necessary because even relatively small amounts of physical, cognitive, sensory or emotional activity can trigger a significant worsening of symptoms.
It may describe someone as "housebound" or “confined to bed” without explaining that leaving the house or bed may involve an enormous physiological cost.
It may say that someone "doesn't communicate" without explaining that they may be conserving energy, unable to speak, unable to process information, or experiencing overwhelming sensory or cognitive symptoms.
It may describe a darkened bedroom as evidence of isolation, when for someone with Severe ME it may actually be an essential low-stimulus environment.
And it may describe someone as "bedbound" without conveying just how different being confined to bed by severe illness is from simply choosing to spend time in bed.
These omissions matter because they change how the reader understands the illness.
Headlines matter too
We would also ask editors and journalists to consider whether headlines accurately reflect the article that follows.
Headlines are often the only part of an article many people will ever see.
A sensational, simplistic or misleading headline can therefore shape public understanding of ME long before the reader reaches the full story.
Please consider avoiding headlines or phrases that:
• reduce ME to "tiredness" or "fatigue";
• imply that people with ME simply need more rest or sleep;
• misleadingly portray Severe ME as a psychological state without appropriate evidence;
• suggest that symptoms are simply a matter of motivation or determination;
• imply that a person could recover if they simply "pushed through";
• present disputed hypotheses as established scientific fact;
or
• use an individual's story to make sweeping claims about all people with ME.
There is still much that researchers do not know about ME, and that uncertainty should be reported honestly.
But uncertainty about the precise mechanisms of a disease is not the same thing as uncertainty about whether people are genuinely and seriously ill.
Good journalism can acknowledge what is known, what is not yet known, and where scientific debate remains, without presenting people living with the illness as though their illness itself is in question.
Please don't leave Severe ME out of the picture
Another important issue is omission.
ME exists across a spectrum of severity, but people with Severe and Very Severe ME can be among the least visible.
Someone who is too ill to attend an interview, answer questions, use social media, appear on television or leave their home can easily disappear from the public narrative.
This creates a serious problem.
If media coverage mainly features people who are well enough to travel, speak at length, work, attend events or participate in interviews, readers may understandably develop a distorted picture of what Severe ME looks like.
The people who are least able to tell their own stories publicly must not become the people who are least represented.
Journalists should therefore consider whether their reporting includes the experiences of people with the most severe forms of the illness, including people who communicate through carers, advocates, assistive technology or very limited forms of communication.
Their absence from an interview should not be interpreted as an absence from the story.
The reality behind the image matters too
There is another issue we would like newspapers and magazines to consider and that is the imagery used to illustrate ME.
Journalists have explained that photographs are often selected by a newspaper or magazine's visual team rather than by the journalist who writes the article.
We therefore believe this conversation needs to include picture editors, visual teams and image libraries, as well as reporters.
For far too long, ME and Severe ME in particular has frequently been represented by generic photographs of:
• someone yawning at a desk;
• an exhausted-looking office worker;
• someone holding their head;
• someone sleeping after a long day;
or
• someone who simply looks tired.
These images may be convenient stock photography, but they can be profoundly misleading when the subject is Severe ME.
They can make a serious disabling neurological and multisystem illness look like ordinary tiredness.
Representation is part of accuracy
Accurate reporting is not only about getting the words right.
It is also about getting the context right.
It is about recognising what has been omitted.
And it is about choosing images that do not contradict the story being told.
- A person lying in a darkened room is not necessarily "sleeping off tiredness".
- A person wearing ear protection is not necessarily avoiding the world.
- A person wearing an eye mask is not necessarily simply taking a nap.
- A person who cannot speak is not necessarily unwilling to communicate.
- A person who is bedbound is not simply someone who "stays in bed".
For some people with Severe or Very Severe ME, these are adaptations to an illness that can make ordinary sensory input, movement, communication and daily activities extraordinarily difficult.
Please help the public understand the difference.
To journalists and editors
We recognise the pressures under which journalists work, including limited time, limited space and the need to find compelling personal stories and appropriate images.
This is not a request for sympathetic reporting at the expense of objectivity.
It is a request for accurate reporting that reflects the evidence and the lived reality of the illness.
We ask that you:
Listen to people with ME.
Check the evidence.
Question the assumptions.
Don't confuse fatigue with ME.
Don't overlook Severe and Very Severe ME.
Don't allow important context to disappear through omission.
And please choose images that represent the illness rather than a stereotype.
People with ME including Severe ME deserve to be represented with the same accuracy, dignity and journalistic care afforded to people living with other serious illnesses.
Their illness may be largely invisible to the outside world.
That does not mean it should be invisible in the media.
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