It's International ME/CFS Awareness Day- May 12th; the day when everyone affected tries to get the word out about this illness, but why does awareness matter?
• Awareness matters because when I say I have CFS, more often than not, people don't know what it is or what it stands for.
• Awareness matters because, when I say I have Chronic Fatigue Syndrome, some people think I just get tired- there's so much more to it than that.
• Awareness matters because I have been asked several times whether CFS makes me fall asleep spontaneously- no, that's narcolepsy, CFS causes sleep disturbances, but normally in the form of insomnia.
• Awareness matters because some doctors end up asking me about my condition, and I end up educating them, instead of the other way round.
• Awareness matters because the world seems oblivious to the extent and severity of suffering caused by this illness.
• Awareness matters because those suffering most are unable to speak up themselves.
• Awareness matters because I want to say 'I have CFS' and get the same level of understanding that someone would get if they said 'I have MS'- the two conditions are very similar in a lot of ways, yet MS, and most other conditions, appear to be far better understood by the general public.
• Awareness matters because some sufferers are still receiving the wrong advice from doctors, which leads to worsening of their condition.
• Awareness matters because some patients are still going years without a diagnosis.
• Awareness matters because more research needs to be funded into the condition.
• Awareness matters because there is no real treatment, and certainly no cure.
• Awareness matters because so many thousands of people are living very limited lives as a result of this illness, and we deserve more.
• Awareness matters because there are people lying bed-ridden, scared, paralysed and tube-fed, and there's nothing doctors can do to make them better.
• Awareness matters, because there continue to be child protection cases brought against innocent parents withdrawing their children from harmful exercise programmes.
• Awareness matters because some sufferers continue to take their own lives because they cannot tolerate the suffering any longer.
• Awareness matters because this illness is destroying so many lives- so many hopes and dreams- and we want people to understand and help us to fight for a brighter future.
Imagine a world where everyone has heard of CFS. Imagine everyone knowing about and understanding all the biological abnormalities that have been found. Imagine important people taking interest in this well-known illness, and funding more research. Imagine this research finding an effective treatment, or even a cure. Imagine all those currently unable to walk or study or work being able to do these things again as a result. Imagine us all getting our lives back.
Awareness is the first step towards this dream coming true. Please, raise ME/CFS awareness in whatever way you can today!
I am participating in #May12thBlogBomb (http://sallyjustme.blogspot.co.uk/2014/04/may-12-blog-bomb.html?m=1)