Tuesday 12th May is International ME Awareness Day so we are marking this week with information and stories from local people with first hand experience of this debilitating and much misunderstood illness.
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), is a chronic, debilitating condition with a wide range of symptoms that can vary in type and intensity affecting over 250,000 people in the UK alone. Symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, balance and visual disturbances, poor memory and concentration, speech difficulties and hyper-sensitivity to noise, light and touch.
In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years. For all, it is largely an invisible illness and ME Awareness Day is about improving that visibility.
Ely ME Support Group is a local Facebook group started by Helena Scott after a chance meeting with another sufferer in Ely. The group is now 10 strong and offers a place to chat and exchange information and ideas. As their contribution to ME Awareness Week, some of the group have bravely chosen to talk about themselves and how they are affected by this devastating illness. Here is Diane’s contribution:
‘The Trouble With ME.’
I’ve suffered from ME for nearly 20 years now. Its been a rollercoaster of ups and downs, fortunately most of the time I’ve only been moderately affected, but there have been moments of severity. When I first became ill it was the early 90’s and there was little known about ME, apart from the fact that it was often called ‘Yuppie Flu’! A misnomer if ever there was one – definitely not just flu & categorically not just afflicting yuppies. Over the years I’ve known children as young as 8 and pensioners as old as 80 with it – it doesn’t discriminate.
But, on the other hand, nearly everyone I tell knows someone else with ME – people are aware of it, but sadly the knowledge stops there and the unintentional ignorance begins!
‘Its that illness where you get really tired, isn’t it?’ Well, yes and NO! Its great that people have some concept, but its a shame that the public concept is is woefully inadequate.
Tiredness is having a bad night or working a long week: ME is waking up after a gentle week of doing next to nothing to still feel bone numbingly weak – a weakness that pervades the whole body weakening the immune system, the digestive system, causing a thick fog to fill the brain so you can’t think straight, & causing muscles to ache and being in constant pain. And to make it more confusing, everyone’s symptoms are a little bit different.
Its a difficult illness to understand; for those of us suffering from it, to those in a medical position, to those who just look on. I hope and believe that there is slowly more understanding from all areas, & that a more focused direction is happening in research, so that in another 20 years from now it will be recognised, understood and hopefully even cured.