Kara Jane died of M.E. When will we take post-viral illness seriously?

TW: This piece discusses the sudden death of a disabled person, Kara Jane. Please take care when reading

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Two days into 2023, the friends of bedbound musician Kara Jane, 32, shared the heartbreaking news that she had sadly passed away. 

“In the end, her body was too frail to survive,” they wrote on her website that evening. “Her spirit remained strong until the last, and she faced the end with the same incredible courage that she showed throughout her illness.”

Kara had a severe form of the post-viral illness Myalgic Encephalomyletis (M.E.), which left her bedbound, unable to walk, and in need of full-time nursing care.

As an M.E. patient myself, I’d been aware of Kara via our overlapping Twitter networks for a while. But as a talented musician, she first came to prominence in May 2020, when she put out a call online for someone to help her finish her album from her bed. 

Remarkably, more than 100 producers and musicians answered. The completed album, It’s Still M.E, outsold Taylor Swift on Amazon and iTunes for several weeks, and prompted Dolly Parton to call Kara personally. 

A committed campaigner for biomedical research into her condition, Kara donated the proceeds from the album’s sale to the ME Association, with the aim of raising £100,000 to establish a post-mortem research facility into the most severe forms of the illness.

While the JustGiving page is still accepting donations, sadly, this facility won’t be set up in time for Kara. And her death has, once again, raised the question of when governments and medicine will start to take post-viral illness seriously.

In some ways, it’s easy to see why they don’t. The political history of M.E. is a long and fraught one, with many members of the public — and even some doctors — misinformed about its severity, and believing it to be psychological in origin.

Still fewer understand that post-viral illness can and does kill. However, the reality is very different from the misconceptions. 

Around 25% of the estimated 15 – 30 million patients with M.E. worldwide are housebound or bedbound. 75% are too unwell to work, and research shows that people with M.E. have a lower quality of life than patients with congestive heart failure, Multiple Sclerosis, and other serious health conditions.

Despite this, the many deaths from M.E. are often recorded as other illnesses — complications related to the huge impact on the immune and nervous systems caused by the post-viral syndrome.

The scale of this condition, then, is hugely underreported. While a handful of deaths every year are recorded as being related to post-viral disease, Kara has become one of the few people in the UK to have M.E. listed officially on her death certificate.

This is doubly heartbreaking because one of the last people who “officially” died because of M.E. was Kara’s close friend, Merryn Crofts, who died in hospice care in 2017 only ten days after her 21^st Birthday. 

Watching our community lose people to this illness time and time again never gets easier. But what makes it far worse, is that governments and medical professionals aren’t paying attention.

At the beginning of the pandemic, M.E. patients, researchers, and charities were all warning of the huge potential for a second pandemic of post-viral illness still to come. Yet the existence of Long Covid only came to prominence in the press at the end of the first year.

Then, doctors wrote articles expressing their bewilderment at the existence of post-viral illness. Some wrote it off as psychological, in direct opposition to the increasing number of studies that show physical abnormalities in the blood, brain, and gut of both M.E. and Long Covid patients. And yet, the misconceptions persist.

Today, many LC sufferers and their doctors still don’t realise that their symptoms — neurological, immune, breathing, cardiovascular, digestive, and cognitive — are shockingly similar, if not identical, to those experienced by M.E patients.

Having been housebound myself since 2016, it’s difficult to ignore the fact that, had governments and medicine taken post-viral illness seriously years ago, we would probably have had effective treatments for these new patients by the time the pandemic began.

If that were the case, could Merryn and Kara have been saved?

Unfortunately, that’s a question without an answer. But with millions more people contracting both Long Covid and M.E., our societies are now facing an epidemic of severely disabled patients. Alongside a struggling health service that has no idea how to treat us.

Now, more than ever, we need a robust health system with well-paid staff, and a new focus on the research and treatment of post-viral illness.

Not as a psychosomatic phenomenon, but as a severely disabling physical disease that can and does kill people.

Sadly, it’s too late for Kara, Merryn, and the many others who have lost their lives to these conditions. But it isn’t too late for the millions of us around the world — growing in number every day — who are still waiting for medicine to help us, and for governments and health agencies to invest in appropriate research.

Kara and Merryn didn’t die of ‘fatigue’ or ‘malingering’. They died of a multi-system, neuroimmune post-viral illness, and unless something drastic changes soon, they won’t be the only ones who suffer.

• You can find Kara Jane’s album here

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