If you happen to be down near Holyrood today around 12-2pm you may wonder what is going on outside that concrete monstrosity. Well, it is the same thing that is happening in cities all around Europe under the banner of Missing Millions.
This campaign is to highlight ME, or chronic fatigue for those of us who like medical problems explained in a simple manner.
I know people who have suffered from this condition and the effects it has had on their lives. First, it is often not diagnosed by doctors – I have been told that many of them really don’t believe that it exists. There aren’t really any visible symptoms which can point to the problem. No bleeding or broken limbs and blood tests are often inconclusive. However, it makes working virtually impossible and, therefore, without a diagnosis there is no access to sickness benefit.
According to experts, ME is a chronic illness, it can be as disabling as multiple sclerosis or congestive heart failure. It has a devastating impact: there is no effective treatment or cure and 25 per cent of people with ME are bedbound or housebound, sometimes for decades.
It is estimated that there are almost 20 million people worldwide who suffer, yet research into ME is negligible compared to that into multiple sclerosis, which affects fewer people, although no less a debilitating condition, may I add.
It is also reckoned that ME costs the British economy an estimated £6.4 billion per year.
Of course, there are many of those who suffer from ME who simply will not be able to make it to Holyrood tomorrow because they physically cannot do the journey. There are also those who care for their loved ones who shall be absent.
They will be represented by a shoe which they will have sent to the organiser, Emma Shorter (pictured), whose university studies were interrupted by being struck by ME at the age of 19, and despite being virtually housebound has put together this event.
So cheer them on and let’s hope that by raising awareness someone can try and find a cure.