Kara Jane Spencer in a pink top. She wears glasses and has an oxygen nasal cannula

January 2023: We are heartbroken to announce that Kara has passed away. Her fund remains active, however, and donations in her memory are gratefully received.

In July 2020, Kara wrote:

Your support is vital to the success of my album – I can’t do it without you!

There are three main ways that you can support me:

1 – Buy my album!  Every penny raised will go towards research into the severest cases of ME.  (More details below.)  It will also help raise awareness of just how serious this illness can be.

2 – Donate to my fund.  If you wish to make a donation in addition to purchasing the album, please visit my Just Giving page.

3 – Spread the word about my album, on social media and in person.  The more people we can reach, the greater the success of the project.

My aim

I want to raise £100,000 to support the ME Association in their aim of establishing a post-mortem research facility for those who die with or from ME.    

The money raised will go to the ME Association’s Ramsay Research Fund, where it will be ring fenced with no salaries or admin costs taken out.  

If I can raise £100,000, it will enable the MEA to take the early steps towards establishing this vital facility. 

This project is particularly important to me as my close friend, Merryn Crofts, died of severe ME three years ago, aged 21.

Thank you so much for your support – it means the world to me.  Please sign up below and follow me on social media to receive updates. 

Statement from the ME Association

Dr Charles Shepherd of the MEA writes:

Post-mortem research and ‘brain banks’ are a vital component of any research strategy when it comes to finding the underlying cause of diseases that affect the brain and nervous system.

This sort of research is already taking place in the case of diseases such as multiple sclerosis, Parkinson’s disease and Alzheimer’s Disease.

The ME/CFS post-mortem research group have already reported on some important abnormalities, including inflammation in structures called the dorsal root ganglion, in the small number of post-mortems that have been carried out in people with ME/CFS here in the UK.

This is why we set up and published a study which examined the feasibility of setting up a formal post-mortem research facility (‘brain bank’) here in the UK for ME.

Such a facility will also honour Merryn Crofts, and many others, who have very sadly died from ME/CFS and donated body tissue for research purposes.

We are immensely grateful to Kara for using the proceeds of her record sales to establish a new section within the MEA Ramsay Research Fund that will be dedicated to advancing post-mortem research and hopefully setting up a formal research facility.

However, the MEA must make it clear to people who are donating, that it is going to be a long, complex and costly thing to do.

Consequently, there can be no guarantees that it can be achieved in the short term.

If we are unable to secure the necessary funding and human resources to take this proposal forward by the end of 2021, we will consult with Kara and MEA members as to how to make the best use of any money that has been donated. 

Dr Charles Shepherd

Hon Medical Adviser, ME Association

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