Birmingham Live: James Rodger Head of Trends, 10 August 2020.
Kara Jane Spencer, 29, from Shirebrook, Derbyshire, was diagnosed with the debilitating condition when she was just 16 after she became unable to walk.
A singer who has ME has released her debut album, after spending two years recording it while bedbound, with it currently number two in the Amazon Best Sellers chart ahead of Taylor Swift.
Kara Jane Spencer, 29, from Shirebrook, Derbyshire., was diagnosed with the debilitating condition when she was just 16 after she became unable to walk.
Her movement is now severely restricted, and she needs full-time nursing care.
In May, she asked for help to complete the album and more than 100 musicians and producers came forward to offer their services.
Kara said her symptoms were so severe, doctors have warned it could shorten her life expectancy.
However, she was “overwhelmed” with the number of people who have offered their services, with her beginning the album in January 2018 during a stint in hospital.
A small team of musicians, technicians and producers took vocals recorded from her bed and built them up into fully formed tracks.
The finished album, titled ‘It's Still ME’, became available to purchase and download on Saturday (08 August) with donations being made to The ME Association. Kara hopes to raise £100,000 for a Post-Mortem M.E. Tissue Bank.
You can download the album for free or purchase it from these and other music sites.
Please also consider making a donation to Kara's appeal:
1. SPOTIFY
2. ITUNES
3. GOOGLE PLAY
4. AMAZON
5. DONATE
As of yesterday (09/08) the album is number two in the UK Amazon Best Sellers chart!
It is ahead of Taylor Swift and the Killers while it stands at 68 in the iTunes equivalent.
On the album’s surge in popularity, Kara said:
“I keep staring at the computer screen with big eyes. I have no idea how it happened it's incredible.
“I feel incredulous. I don't know how to feel about it. It has just gone boom.
“It's incredible, it doesn't feel like it's real. I still feel like I am in a dream state, to be honest.
“It's not something that happens to normal people.
“I am gobsmacked at the moment. But in the same instance, I know that there's money. going to the charity with every sale.
“It will be going towards post-mortem research, and my head keeps thinking, ‘I wonder how much we've raised'.
“If we can raise a decent amount that can really help them then, oh my god, I'll be proud of that.”
Kara has a severe form of ME, or myalgic encephalomyelitis, and is described by the NHS as a long-term illness with a wide range of symptoms.
“It affects your brain and spinal cord. For me, it's become systemic, so it affects my whole body and all the organ systems.
“It's caused a lot of problems with my autonomic nervous system. Your heart rate, for example, is normally automatic.
“Your blood pressure, your swallowing is also normally automatic.
“I have my oxygen cannula; my catheter tube and I'll soon have a PEG tube, so I am tube lady.
“My immune system is quite severely affected; it doesn't work as well as other people's.
“I can get infections just from the stuff that's meant to be inside your bladder, and I have become resistant to antibiotics. It's why ME is life-threatening for me.
“If I get one infection that I don't respond well to then we can't do anything about it because I've not really got very many antibiotics that we can try.
“I was diagnosed at the age of 16 when I lost the ability to walk. I'm not able to get out of bed but I do have a wheelchair.
“Until then, I was healthy and active – “loud, crazy and always laughing” – in the words of my sister.
You can download the album for free or purchase it from these and other music sites. Please also consider making a donation to Kara's appeal:
1. SPOTIFY
2. ITUNES
3. GOOGLE PLAY
4. AMAZON
5. DONATE
“My condition steadily deteriorated, until seven years ago I became completely bedridden.
“Whenever I do something there's always a cost or payback and I might be in pain.
“For example, the other day I was doing too much, and I had partial paralysis from the head down.
“My carers have to move my head and arms into a better position. Literally totally paralysed, not able to swallow as well.
“That lasted for six hours, which might not sound like a long time, but it really is scary.”
Singing has always been Kara’s passion, right from when she was a small child.
After her health took a turn for the worst, she started writing the songs on the album back in January 2018 while in her hospital bed.
Kara wanted to record her singing voice so her two-and-a-half-year-old nephew would have something to remember her by if the worst were to happen.
“We're all singers in our family, we are like the Von Trapp's, so I didn't feel unique or special.
“When I went to university people said I had a good voice. When I became really ill, I was really gutted because I was at a stage at one time where I couldn't sing.
“No matter what will in the world, I would not have been physically able to sing. I was gutted I had never recorded my voice before.
“When I improved slightly enough to be able to sing, even though that's been short blocks of time, I started recording in early 2018.
“Sometimes it's a line at a time, sometimes it's a verse. I would have to then stop the recording for a little bit and go again.
“I have made myself poorly doing it sometimes, I've done it too much. I knew that I wanted to record an album.
“I've always written songs, but I'd not kept every one of them. I had one that I thought was really good, from 2015, but I didn't do anything with it.
“After I was in the hospital for a six months stint, songs just came to me.
“It was a big creative catalyst. Back then I was warned about my life expectancy.
“I could be here for another five or six years or I could be gone with the next two infections.
You can download the album for free or purchase it from these and other music sites. Please also consider making a donation to Kara's appeal:
1. SPOTIFY
2. ITUNES
3. GOOGLE PLAY
4. AMAZON
5. DONATE
“It's very up in the air so it's just like anybody else really, but it's not. I am more likely to die due to infection than anyone else.
“When I heard these things, the songs just came to me and demanded to be written.
“One was about my nephew as I wanted to write a song for him in case I didn't grow up with him and have memories of me.
“One was because of anger for my follow ME sufferers and how they're being treated.
“There's a really big case trial but we have been treated rather horrifically by the NHS guidelines.
“It has been disbanded basically since five years ago. They are treating people via these guidelines, even though some of it has even been found to be harmful, not only ineffective.
“My anger about that inspired a couple of songs; one of my best friends Merryn, she died to this illness three years past at 21 after she was diagnosed at age 15.
“Songs came to me because I had loved and lost.
“That's very poignant in my life because me and my love we still love each other but we just can't be together.
“He is disabled, and I am very disabled so there's no life we could have together.
“It's not just an album just about a poorly girl, it's something a lot of people have related to. A group of people being put through hell, like ME sufferers, is not just unique to me.
“It has happened to so many people over the years.
“The last song on the album, ‘Remember Us' it says, ‘You let me down, You let him down, You let us down,' and it rolls onto ‘Remember Us, Remember Them'.
“It's about the difficulties as we have been let down as a community of people.”
You can download the album for free or purchase it from these and other music sites. Please also consider making a donation to Kara's appeal:
1. SPOTIFY
2. ITUNES
3. GOOGLE PLAY
4. AMAZON
5. DONATE
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