Myalgic Encephalomyelitis (M.E.) is a chronic fluctuating condition, also known as Chronic Fatigue Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS). M.E. affects around 250,000 adults and children in the UK.
The condition affects more women than men, and can affect anyone of any age. Research also suggests that for people from BAME communities there are “barriers at every stage to the diagnosis and management of M.E”.
Many people with M.E. face isolation as friends, family and professionals struggle to cope with the true impact of the illness. People with the condition experience severe, persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expanding even small amounts of energy, sometimes called ‘payback’) and chronic pain. Any physical or mental activity can trigger a flare-up in symptoms.
“At my worst, three strokes of brushing my teeth felt like I had done 100 press-ups. I was in constant pain. I slept for 18 hours solid at one point, and on average I would be awake for no more than one hour at a time, usually to eat”.
That’s the experience of 51-year-old Olatunde Spence from Chorlton, who has the disabling neurological disease that can affect anyone at any given moment. By sharing her story for M.E. Awareness Month in May Olatunde is sending a simple message – don’t ignore M.E.
Speaking of experiences that she has had as a result of having the illness, Olatunde has remarked “I have ended up relapsing and have been stuck in the house since January. I have been really upset by the fact that I cannot walk a fraction of the distance I used to be able to walk, so shopping is out”.
Olatunde continued, “When I have been out with my daughter I have ended up back in bed, in pain and not sleeping well at all. The school holiday breaks have been awful because we cannot plan anything or go anywhere and living on benefits has really reduced our income for treats”.
Around a quarter of people with M.E. are so severely affected that they remain bed or housebound.
Olatunde also remarked “I thought my condition would continue to improve over time. Accepting that I have relapsed has been the hardest thing. It’s difficult because I never imagined it would happen and therefore I have to accept I am vulnerable to knock backs and relapses, which is really hard to do”.
UK charity Action for M.E. is taking action to end the ignorance, injustice and neglect experienced by people who suffer from M.E.
Find out how you can make a difference to the lives of people with M.E. right now at www.actionforme.org.uk or call 0117 927 9551.