About

Kara Jane

Kara Jane was a talented young woman with a remarkable spirit and a special dream. Despite being told by doctors that she wouldn’t live to see her 30th birthday, Kara Jane wanted her short life to have a lasting impact. 

Kara’s dream was to raise £100,000 for research into ME, the condition that devastated her life. (Read more about ME here and here.) She hoped that a cure might be discovered in time for others, even though it would be too late for her. She also fiercely advocated for awareness of the illness, wanting to make the world understand just how serious ME can be. 

She achieved all of this in a unique way. 

Kara was bedridden with severe ME, and required oxygen, morphine, fentanyl, a catheter and 24-hour nursing care. But with the help of some special friends and generous strangers, she recorded an album from her bed. Released in August 2020, It’s Still M.E briefly outsold Taylor Swift in the Amazon and iTunes charts, and reached number 8 in the official UK download chart. 

Kara Jane died of ME on 2nd January 2023 at the age of 32, but her incredible legacy lives on in the form of her chart-topping album, It’s Still M.E, and the follow-up album, In Limbo, on which she was working at the time of her death. 

In Limbo has been completed posthumously by her family and production team, and will be released on 8th August 2025 – five years to the day after It’s Still M.E. 

Her family say: “Kara’s legacy lives on through her music. It’s very important to us that we finish what she started and bring her second album out into the world. We want to continue her work of raising awareness of this devastating illness, as well as funds for desperately-needed research.”

The story of It’s Still M.E

Kara’s family believe her illness started after a viral infection when she was eight. Like many people with ME, Kara encountered disbelief from the medical profession. Doctors accused her parents of encouraging her illness and advised them to make her exercise, which they did – not realising how damaging this can be for someone with ME. 

Kara was eventually diagnosed with ME at the age of 16, after suddenly losing the ability to walk. Until then, she had been, in the words of her sister Emily, “loud, crazy and always laughing”, although Kara later said to her dad that she could not remember a time without pain. After her diagnosis she attended university in a wheelchair, but her health steadily deteriorated until she became completely bedridden in her early 20s. Her immune system was so badly affected by her ME that she suffered frequent life-threatening infections and sepsis. After being told by doctors that she didn’t have long left to live, and suffering relentless pain and other severe symptoms, Kara Jane began expressing her emotions through songwriting. 

She had no way to attend a recording studio as she was bed-bound and on oxygen apparatus, and was so weak that she could sing only a line or two at a time. But while in Kings Mill hospital, she was visited by friend Scott James, who slowly recorded a demo track with her.  Now Kara needed musicians and producers to help complete her album. Another friend and fellow ME sufferer, Naomi Whittingham, sent Kara’s story to BBC journalist Gavin Bevis, who shared her request for help on the BBC News website in May 2020. The response was overwhelming: hundreds of musicians and producers got in touch, all wanting to help Kara. 

Her dream of releasing an album was now a possibility if only she could survive long enough. Kara Jane recorded her vocals from her bed at home, a specially adapted bungalow in Shirebrook, Derbyshire, UK. Often singing just one line at a time, the recordings were sent to sound engineer Liam Hicks, who built a team of musicians and professionals from contacts he knew, and new ones from the BBC News post.

This is a great good news story from the covid pandemic, as most of the musicians involved were not able to tour or record in studio due to the restrictions in place at the time. The musicians collaborated from their homes all around the world, via WhatsApp and other platforms like WeTransfer.

As work progressed, Kara Jane was repeatedly admitted to hospital with life-threatening infections.  It was a miracle not only that this fantastic album could be produced, but that she survived so many threats to her life to see it released on the 8th of August 2020, Severe ME Awareness Day.

The album’s success eclipsed anything Kara had dreamed of. She topped the Amazon and iTunes Charts, for a time holding off artists such as Taylor Swift. And at the end of the first week, Kara heard that It’s Still M.E had reached number 8 in the official UK download chart. 

Her story was featured widely across the media, including BBC News and Channel 5 News, and she even had a phone call from legendary singer Dolly Parton. 

In 2020, Kara Jane said of It’s Still M.E:

“The album means an incredible amount to me.  It represents my journey so far: it’s about loss, anger and pain – but most of all it’s about love. It has been my way of processing all that I’ve been through with severe ME. It’s also my legacy to leave to the world long after I am gone. It’s my achievement and means that my life was not wasted. If it can then keep doing good with every sale, that is what makes me smile. It’s what I will live for each day.”

The creation of In Limbo

Kara Jane, a devout Christian, was now ready for meeting her father in heaven. She had survived several years since being told that her condition would likely prove fatal, but her suffering was extreme and she was ready to be free of it.  

During yet another hospital admission, just a few months after the album’s release, Kara’s father David received a call from the hospital, asking them to go in. David had received this call many times before, but this time the Matron’s voice was different. Kara’s parents travelled immediately to hospital and were told that Kara was seriously ill with covid and not expected to survive the night. 

David says:

“Kara was surprised at us arriving to see her, dressed in PPE and masks, as no one was allowed to visit at this time due to covid restrictions. Then the Matron and we shared the news with Kara that she was very ill and would probably not survive. Kara had survived comas and much more, but this seemed like the end.”

Prayers were said, and David called Kara’s dear friend Naomi Whittingham to ask if she would prepare a statement in case Kara passed away in the night. Kara also asked David to write a Facebook post to say thank you and goodbye to everyone she knew. He held her hand through the next six days and nights until Kara was out of the critical stage of covid. 

Kara had beaten the odds yet again and had survived. But what now?

While her loved ones celebrated the fact that she had survived, Kara was distraught. She had been in a deep sleep and had believed that she was going to meet her father in heaven, in a place of no more suffering. To wake and realise that she had survived, and that the pain was ongoing, was unbearable to her. 

This is when Kara needed to articulate and process her deep questions to God, and so began writing her second album, In Limbo. The songs are a heartfelt expression of her physical and emotional pain; they are conversations with her Daddy, not just David, but also with her Father in heaven.

Against all expectations, Kara was to live for a further two years. Despite her suffering she remained kind, caring and determined until the end. She brought light to the lives of her family and friends and is greatly missed. 

Kara Jane’s dream lives on

Since Kara’s death on the 2nd January 2023, her family have continued her mission to raise awareness of those with ME and similar conditions. Her sister, Emily Louise, has written and recorded two tracks on the album that Kara was unable to complete with her, and the family have worked closely with Kara Jane’s production team, who have continued working on the album posthumously. 

Kara’s family hope that this album will help people suffering from the terrible illness of ME.  Many face disbelief from family, the general public, medical professionals, and governments, just as Kara herself did. The treatment of those with ME has repeatedly been called the greatest ever medical scandal. When she died, Kara became one of the few people in the UK to have ME registered as the cause of death. No one knows the true scale of fatalities from the illness, as deaths are usually attributed to other causes. Kara would have seen having ME on her death certificate as vital progress in understanding of the condition. 

Continuing Kara Jane’s fundraising

Kara Jane’s wish was to raise desperately needed funds for biomedical research into ME. All proceeds from It’s Still M.E went towards a ring-fenced research fund at the ME Association, and the same will happen with her second album, In Limbo. Her target of raising £100,000 was not reached before she died, with a current total standing at just over £18,000. Most of this money came from direct donations, while platforms such as Amazon, Apple, Spotify, etc., took much of the profits from album sales. Nonetheless, the awareness generated by the album, and the comfort Kara’s music has brought to countless people, cannot be overestimated. Please see Kara’s fundraising page for details on how you can continue to support her fund, as well as a statement from the ME Association on how the money will be used. 

Also, please continue to follow us for news of when her second album, In Limbo, will be released. Your support meant the world to Kara, and continues to do so to all who loved her.