ME: Myalgic Encephalopathy
Hi, I'm Helen, I'm 19, a Christian, and currently taking time out from studying art due to having ME. ME (Myalgic Encephalopathy) also known as CFS (Chronic Fatigue Syndrome) is a debilitating illness affecting approximately 250,000 people in the UK, of which about 25,000 are children and young people.
I personally became ill when I was 11 following a vaccination and glandular fever, although various causes are known to trigger ME in people. Symptoms vary not only from person to person, but from day to day and even hour to hour. Throughout the time I've been ill I've suffered from chronic tonsillitis and headaches, constant muscle and joint pain, and fatigue unlike anything experienced by a "normal" person, not helped by a disturbed sleep pattern and vivid nightmares. These symptoms are all worsened by the slightest activity, though are even present when resting. Other problems commonly recognised in ME are gastro problems and “brain fog” - confusion, memory loss and general mental fatigue. Severity of symptoms varies immensely, with some sufferers being able to live a near-normal life, whilst others remaining bed bound and tube fed for years. No cure is known, although various things are found helpful by some sufferers, such as homeopathy, CBT and pacing the amount of activity done each day; most painkillers are ineffective.
ME is a very isolating illness, as many people don't understand and don't know how to approach you, and some think you're "faking it". Sufferers struggle to find the energy to maintain friendships, not helped by being too unwell to attend Church, school, work, and even social gatherings. Having siblings and a fiancé who also have ME really helps me to cope, and the internet has been a life saver, offering places to meet with fellow sufferers, form friendships and share faith.
For those interested in finding out more about ME this awareness week, or wanting to make contact with other ME sufferers, I can recommend the following websites:
There are, of course, many more groups out there too, and extra support can be found through groups on social networking sites such as Facebook.
If you wish to talk to me more about ME, or to my Mum, Gill, who has lived with children with ME for 20 years, you can contact us through St Mary’s Church office.
ME is an invisible disability, but just because it can't be seen, doesn't mean it isn't there. It's a lonely illness, with major consequences on lives. It needs to be taken more seriously.