A campaign group will be targeting UK media outlets during global ME Awareness Day – calling out what it calls the corporate media’s systemic “mis-and-disinformation” relating to this chronic illness.

It comes amid growing concern that the same psychologisation certain medical professionals and the media have enacted towards myalgic encephalomyelitis (ME, also known as ME/CFS) patients is now also being used against people living with long Covid.

ME Awareness Day: what is this debilitating illness?

ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological.

Psychologising the physical

As the Canary’s Hannah Sharland recently wrote, there is:

a long global history of medical misogyny and trivialisation of the illness. Notably, one flawed 1970s study for instance, labelled a significant outbreak of the disease as hysteria.

This psychosomatic diagnosis, with sexist origins in tow, has persisted into the modern medical era. Of course, this also tracks, given that both historically and today, more women go on to develop the disease than men.

The medical establishment’s approach to ME/CFS is still mired in this same pernicious thinking. Largely, this pervasive psychologisation in recent years has come as a result of a persisting and highly controversial clinical study known as the PACE trial.

You can read more on the disease’s history here.

As Sharland also noted, medical professionals are also now using this ‘all in your head’ gaslighting against long Covid patients.

So, every year 12 May is global ME Awareness Day. This year, campaign group the Chronic Collaboration is set to up the ante when it comes to taking action.

Calling out the corporate media

The group’s founder Nicola Jeffery said in a statement about ME Awareness Day:

Patients have seen mainstream media repeatedly discredit and disregard any attempt to correct this – while at the same time continuing to platform medical professionals who are committed to the psychologisation of ME and Long Covid.

Enough is Enough.

The mainstream media has refused to report correctly on our chronic illness, so we have decided to do it for them.

On ME Awareness Day, the Chronic Collaboration will be reporting live from outside different media studios and offices at different times of the day – calling out their mis-and-disinformation and doing the corrections they should be doing for them.

It also wants people living with ME and long Covid to get involved. Jeffery said:

Whenever we do direct in person actions, we’re always really conscious of the fact that some of us are privileged to be able to even get out on the streets. So, we focus on how chronically ill people at home can get involved. For this demo, we want people to support online to get #MEAwarenessDay #ExposeMENow and #ExposeLongCovidNow trending on 12 May.

But we also want people to have a visible presence at locations we’ll visit. So we’re teaming up with campaign group Not Recovered UK to design roll up banners to plot outside media offices.

We want photos from people living with both ME and long Covid to put on them. People can email hello(at)thechroniccollaboration.com with a square photo (preferably 550×550 pixels), with their name, how long they’ve been sick for, & what they used to do, and we’ll add them to the roll up banners.

The Chronic Collaboration has set itself quite a challenge for ME Awareness Day. It will struggle to find a corporate media outlet that hasn’t contributed to the psychologisation of this very real and very debilitating condition.

ME Awareness Day: not the usual awareness-raising

As the Canary has documented, outlets like the Guardian and the Daily Mail, and broadcasters like the BBC have repeatedly contributed to the distress and gaslighting of people living with ME, and the regression of research into the illness.

For example, BBC ‘entertainment’ show Dragon’s Den was recently embroiled in controversy. It promoted a snake oil treatment for ME called Acu Seeds.

Meanwhile, the Guardian has repeatedly, published inflammatory articles pushing what is best described as junk science, without recourse.

Plus, the Daily Mail has defended members of the psych lobby – smearing chronically ill people in the process.

Until the idea that a physical illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. Specifically, the Chronic Collaboration is correct to be targeting the corporate media within this. These outlets quite literally shape the views of much of the population.

So, as Jeffery summed up for this year’s ME Awareness Day:

Using the hashtags #ExposeMENow and #ExposeLongCovidNow we want our followers and supporters to let these media outlets know exactly what we think. Tag them in posts and tweets throughout the day, showing the reality of these chronic illnesses and correcting their lies. We want our voices to finally be heard.

This ME Awareness Day looks set to be a very disruptive one for the corporate media. What a shame that would be.

All the details of the Chronic Collaboration’s protest are in the image below:

Image