With May the 12th looming I wanted to do something to help promote ME/CFS awareness. Because of work commitments and the fact that I don’t live nearby I’m unable to attend the all fall down for ME demonstration. Instead, I decided to write to my local paper and yesterday they printed my letter. Could you write to your local paper? Try to keep it short (less than 500 words) and simple. You could say something about why we need better awareness. Share something about your experience and think about what you’d like people to have a better understanding of. I always think a gentle message reaches more people than a controversial one.This is what I wrote:
‘This Sunday May 12th is international ME/CFS and Fibromyalgia awareness day. I have ME but I’m one of the lucky ones as my symptoms are relatively mild. About a quarter of the people who have ME are so ill that they couldn’t even consider writing to a local paper, they spend their lives in a darkened room in constant pain, most unable even to feed themselves, some unable even to swallow. And yet this illness is still thought of by many as ‘all in the mind’, and as a result, very little is spent on the biomedical research which is desperately needed to offer hope of a cure.
Because I am relatively well my illness is pretty invisible. If I am very careful not to do too much, I can feel reasonably well for a lot of the time. Unfortunately what constitutes doing too much for me is far lower than for the average person and changes from day to day. The consequences of doing too much are extreme exhaustion, pain and a cloudy mind a bit like having the worst kind of flu. This lasts for several days, sometimes even weeks. Most people don’t see this side of the illness because they will only see me when I am feeling well. I work part time and don’t appear to be ill whilst I’m at work. In order to be able to do that I have to carefully plan how I use my energy, avoid exertion and pay careful attention to pacing myself. I have to spend a lot of my day resting. I don’t have much of a social life because I need to save my energy for work.
You may know someone who has ME who may seem OK when you see them out and about. Please bear in mind the sacrifices they will have made to be able to be out and about. I had to give up my job as a Residential Social Worker the first time I had this illness, the second time I had to give up working as a Ski Instructor.
On Sunday May the 12th please spare a thought for the 250,000 sufferers of this illness in the UK (17 million worldwide). We need hope for a cure, and we need your understanding.’
If you are going to take part in an awareness event, you could email your local paper about it in advance, or write a letter about what you did and why you did it afterwards.