May 9, 2019
Myalgic Encephalomyelitis (ME), commonly known as ‘Chronic Fatigue Syndrome’, affects around 250,000 people in the UK and between 15-30 million people worldwide. Leaving 25% of patients housebound or bed-bound, it’s classified by the World Health Organisation as a Neurological disease but is still a widely misunderstood condition.
My own ME journey started in 2008. I was training to become a professional ballet dancer and suddenly became unwell, never recovering. At my worst, I suffered with paralysis and had to be spoon-fed, requiring help for the simplest of tasks such as brushing my teeth or washing. Over a decade on, I still battle with my ME on a daily basis, but thankfully it’s at a much more manageable level.
Diagnosing ME can be a lengthy process and as there’s no blood test currently available, the patient is assessed by medical history, physical examination, diagnosis criteria and finally, exclusion. It’s a devastating condition, with ME having the lowest quality of life on average from all diseases which have been tested, yet it’s still not taken seriously.
What Can be Done?
Managing ME is challenging and with no effective treatment available on the NHS, medication is often used to help control symptoms. Biomedical research for the condition is seriously underfunded and current NICE guidelines which suggest Graded Exercise Therapy/Cognitive Behavioural Therapy as a treatment method have been seen to have a harmful impact on the ME community. This is why the campaign, ‘Millions Missing’, is so important, voicing the concerns of millions of ME sufferers and their peers.
#MillionsMissing is a global campaign for ME health equality. It’s a worldwide protest for increased government funding for research, clinical trials, medical education and public awareness. The protest highlights the invisible disease and people ‘missing’ from their own lives. ME patients bring along or send in a pair of shoes with a label sharing what they have missed out on due to their condition. The campaign is running until the 12th of May, coinciding with ME Awareness Week, in over 100 cities around the world. To make a difference and join the campaign, use #MillionsMissing on social media or visit millionsmissing.meaction.net to see where your nearest event will be held.
Written by resident blogger, Kate Stanforth.