I told myself for the last 5 miles of the London Marathon that if I kept going until the end I never had to run another marathon again!… but I guess plans change.

On April 12th I will be running the Brighton Marathon to raise money and awareness for a brilliant charity - ME Research UK - for my lovely cousin Alice.

Any donations no matter how small will be so gratefully received by me and my family but if you can’t donate I would still love to raise much needed awareness about ME and how devastating an illness it can be so please read Alice’s story…

My wonderful cousin Alice was diagnosed with ME back in 2020 (at 22 years old) from unknown causes, likely post viral. Before getting ill Alice was full of life, very bright and very active - playing lots of sports and being a regular at the Budleigh Christmas Day swim! She is one of the funniest people I know and so much fun to be around. For a couple of years Alice was limited by ME but managed to still live some of her life, albeit at a slower, less active pace and with a lot more rests. Sadly in 2022, when Alice had just moved into a new flat and was about to start a new job, she relapsed and her condition became classed as very severe ME. Since then, any type of stimulation - physical or mental causes Alice unbearable pain and seizures.

In 2023 Alice became so poorly she couldn’t take in any food and was admitted to hospital, however they couldn’t tube feed her at the angle she needed due to guidelines (any angle above a certain incline caused her too much pain). My cousin Rosie and auntie lived between Alice’s hospital room and their campervan in the hospital car park for weeks continuously advocating for Alice and campaigning for the feeding guidelines to be changed - after a lot of communication with MP’s, ME specialists and the press these guidelines were changed and Alice was able to make it home.

Alice has now been bedbound for nearly 4 years, she is fed through a PEG tube and completely cut off from the world - she has to be in a darkened and silent room and cannot see visitors (except her immediate family and a handful of carers), she cannot use a phone, watch TV or even communicate for long because it is too stimulating.

Alice’s life and the lives of her sister Rosie and my aunt and uncle have drastically changed. They are full time carers for Alice and have spent the last 4 years caring, campaigning, researching and doing everything possible to support medical research into this underfunded and little known about illness.

I am so proud of Rosie, Debbie and Mark for everything they do day in day out to support her.

I haven’t physically seen or spoken to Alice since 2022 (and I miss her so very much) but she passes on messages through Rosie and my auntie. One particular message stuck with me and kept replaying in my head “do things in life and say yes to things while you can because you never know when you won’t be able to”.

So I am saying yes to 26 miles of running round the very hilly streets of Brighton, because I can and because I want to show Alice just how special she is and how much we are all behind her. She is not forgotten and she is not broken. And of course, to hopefully raise some much needed funds for ME Research UK. They are a brilliant charity working to fund crucial research projects. At the moment there is no cure and no treatment for severe ME. We need this to change, and change as quickly as possible.

Thank you for reading :)

About ME Research UK

“...doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?" Jennifer Brea

Only biomedical research can find the causes of ME/CFS, improve diagnosis and treatment, and, ultimately, arrive at a cure. That’s why research is our focus.

We've awarded 64 full grants and 5 PhD-level awards since 2000 and invested over £3.5million. But research is expensive and becoming more so every day. That’s the challenge we face, and that’s why we need your help.