A few days ago, I wrote that AfME were censoring comments left on their YouTube video promotions for the “Ultimate Pillow Fight” campaign. AfME subsequently closed the comment facility. See Read ME UK Events
But Dr John Greensmith does it again in the Western Daily Press:
My “Pillow fight” letter in Western Daily Press (19 March 2008)
My concern is not just about this project, in particular but how we best draw attention to M.E. each year and not just in the UK.
If anyone wishes to make a comment – whatever shade of opinion – the e-mail address is email@example.com
Choose suitable charity events
In the excitement engendered by a pillow fight in some of our principal cities for ME Awareness Week in May, I hope that onlookers will be aware which illness is being represented, and how devastating it is for at least 150,000 people in the UK.
At one time or another, 100 per cent of them will have been unable to lift their heads off a pillow, and many of the 25 per cent most severely affected people are still bedridden after years, even decades, while others are often housebound and more than 25,000 children have schooling disrupted due to its disabling effects.
It is incongruous that, year after year, charities representing illnesses with which sufferers have very low energy levels, such as ME, choose events to highlight their cause and raise funds which require above average levels of energy, such as cycling or rock climbing.
It may be trickier to think of something that requires only the limited energy an ME sufferer could spare (like watching paint dry!) and keep it interesting and educational for spectators, but I could start the suggestions rolling with a sponsored bed push, or show an empty football ground to indicate the number affected, or vacant desks in a classroom.
I am very concerned about any initiative which costs money to join, such as the £275 per team for the pillow fight, or for any other expenses if travelling or accommodation is involved, or the involvement of a professional PR company, before a penny piece goes towards ME research.
I don’t mean to pour cold water on any fundraising event for ME but I do think we should think about the appropriateness of any project and where the money is going to end up.