"....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

My mum has had ME for 31 of her 48 years - 15 of those years were mild, where she lived abroad, worked full-time as a teacher, married and had me (15) and my brother (11) - but has been between moderate to very severe for the last 7 years. She has had to give up the job that she was passionate about, spends most of her days in bed and uses a powerchair for trips outside the house, as walking too far leaves her extremely tired, in pain and back in bed for many days to recover. Before and during COVID, she wasn't able to look after me and my brother at all, we had to live full time with our dad for a couple of years – only visiting her in the evenings or on the weekend. Even now, we can only stay a night at a time at hers, or she gets worse again.

Since she was diagnosed in 1995, at the age of 17, there have been little-to-no improvements in the research behind the biological condition, and no advancements to begin recovery from ME, or even aid in relieving symptoms. In fact, there is very little understanding of the condition amongst health professionals at all. The recent government white paper still did not allocate any funds, despite recognising that research and education for health professionals was a key issue that needs improvement, to better understand the causes of the disease.

Across the UK, MS and Parkinson’s have about 320,000 sufferers between the two, and they both receive more attention than ME has ever, even though ME is believed to affect at least 5x more people (roughly 2.5 million) in the UK alone. ME still has much less awareness, research and almost zero funding allocated towards it.

I am therefore walking from my home in, Huddersfield to the Piece Hall, in Halifax to raise money for ME Research UK, where my mum's first job was at 16. It was the first job she had to leave due to ME. My mum and I have often had a coffee together in the Piece Hall when she was feeling well enough to go, so it's a special place to both of us. It's about 11 miles. I've never walked this far ever before and I'm not sure what to expect but I'm really looking forward to it, along with the satisfaction that I will have raised money that will hopefully help my mum and her friends in the future.