Four weeks ago I was persuaded to run the Bath Half marathon to raise money for Action for M.E.

M.E. is a chronic disease that affects around a quarter of a million people on the UK and 17 million worldwide. One of those is the husband of my good friend and running buddy, so I've seen how cruel this disease is and this is a little way I can help. I'm nowhere near as close to it as her and so I've taken her description of living with a loved one with M.E. to help explain:

"It took my husband a decade to get diagnosed. But even then, there’s no cure, and no effective treatment. Prior to getting ill in 2011, he was a fit and healthy former Harlequins rugby player.He misses out on a huge amount of life with our young family: due to his severe thoracic back and neck pain, he’s never been able to pick up our kids (difficult when our 3 year old is having a screaming tantrum!); when it’s cold, windy or damp he’s housebound, so he misses out on simple things like walking our girls to school; and due to debilitating fatigue he crashes out every day for at least 2 hours – his body just shuts down – meaning he hasn’t been able to hold down a job over the past decade. Most of all though, like others who suffer from M.E., he doesn’t get a break. The pain and the fatigue are constant. M.E. is sometimes casually called “chronic fatigue syndrome” or “CFS”. But the “fatigue” label is very misleading. If I go for a run, I may feel fatigued afterwards. But if I rest, I’ll feel better, right? But for people with M.E. the fatigue is constant. And it is a different type of fatigue that means some people cannot physically get out of bed. And this fatigue never goes away, not with any amount of rest or sleep. He often describes waking up in the morning like he’s “been in a car crash” and someone has “poured acid into his head”. The disease is so cruel because things that would make a healthy person feel healthier, like exercise – make the condition much worse. The key symptom of M.E. is “post exertional malaise” (again the term “malaise” underplays it). This means, for example, if he goes for a 20-minute walk, 24 to 48 hours later he ends up in a “flare up”: his whole system collapses - pressure and pain building behind his eyes, and under his scalp, persistent severe fatigue, feeling 'winded' by the all-over pain."

Alongside providing targeted support and advice to children, young people and adults with M.E., Action for M.E. offer peer support services, works to improve access to appropriate care and collaborates to move biomedical research forward, including co-leading DecodeME, the worlds largest M.E. DNA study.

https://www.actionforme.org.uk/