Back in 2013, I was diagnosed with ME (Myalgic Encephalomyelitis). ME, also known as Chronic Fatigue Syndrome (CFS), remains as mysterious as it was when it was first recorded in Britain in the 1950s; yet it is estimated that around 15-30 million people around the world are suffering from this devastating illness that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

The symptoms, in my case, include migraines, nausea, sore throat, debilitating exhaustion, and its evil twin, insomnia. Other sufferers have it much worse with crippling body pains that leave them in bed for months or, in some cases, years. The worst part is that this cocktail of symptoms is hard to diagnose and often overlooked by GP’s. This means the illness carries a stigma. When an ME sufferer explains that they are tired or unwell, it’s hard for those who don’t know the illness to not think the sufferer is depressed or worse, lazy. This can be very painful as it adds to the loneliness of those trying desperately to recuperate.

On the 12th May, 2018, my husband Kevin and I attended a demonstration in London led by #MEAction, a global grassroots network for people with ME. Not knowing what to expect, we were heartbroken by the stories of parents, children, brothers, sisters, grandparents, nephews … whose lives have been stolen by the illness. The campaign was called #MillionsMissing as a tribute to all those people who are unable to leave their home.

We decided it was important to do something for all those people who are not as lucky as I am; people whose ME is so bad that they are bedridden; people who have no access to the right level of treatment and care, living a very lonely existence, or facing a very slow, painful death … yes, there are people actually dying from the aggravation of symptoms resulting from ME, which was a shocking discovery for me.

This is why on the 8th July, Kevin and my children Kika and Mylo will be joining me in the Colour Run Hero Tour. A fun 5k event in Wembley Park where we will be walking, dancing and doing a bit of running in the name of all those heroines and heroes who very courageously live with ME day in, day out.

Any money raised will go to #MEAction so they can continue their indispensable work in the fight for equality, recognition, and long-term research, policy, and cultural change for ME. You only have to take a look at the outcome of the first-ever ME debate in Parliament last week to understand the importance and impact of their work.

#MEAction is currently looking to raise £55,000 so they can hire an on-the-ground, UK organiser for advocacy, campaigns and medical outreach. With your support, we can help them make a big difference by giving those less fortunate a voice.

Thank you for taking the time to read, your support means a lot.

I leave you with this moving TED talk by Jennifer Brea, co-founder of #MEAction and director of Unrest, an award-winning documentary about ME.