UPDATE 16/5/09 -
The beard is off! Gone! After one hour and destroying three disposable razors, a pair of scissors and half a bottle of rum, the beard was completely removed. Pictures will follow, and the page will remain for people to donate. Thanks everyone!
This year, in ME Awareness Week, I will be shaving off my beard to raise money for the Association of Young People with ME.
It is 6" from the bottom of my jaw to the bottom of the beard, and 10" from the bottom of my nose - depending on whether or not you like to lump handlebars with goatees. Both are coming off.
This beard has been growing since December 22nd, 2003. That is the last time my chin has been completely unadorned. That also makes it five years, four months and eighteen days between the last time it was shaved and the day it comes off - a month shy of two thousand days.
If it was a rat or a mouse, it'd probably have snuffed it already. If it were a human child, it'd be in school now and probably know how to read. Importantly. it'd also be old enough to join AYME, if it was afflicted with ME.
I've come into contact with many people with ME (also known as post-viral fatigue or chronic fatigue syndrome), and all of them were young when they were diagnosed. At it's best, someone with ME might be tired a lot and have to watch how they exert themselves - probably severely limiting a social life outside of school or work, and restricting the hours that they can work. At it's worst, someone is probably in bed for most of the day and in great pain.
Young members of AYME describe what ME is like
ME has only relatively recently been officially recognised as a condition, and there are still some doctors who don't like to diagnose it. This is partly because no definite cause or disease markers, but is nevertheless "clinically recognisable".
AYME helps kids by providing a magazine (Cheers!) and internet forum for ME sufferers to talk to each other, give each other fun ideas for activities that aren't difficult or work-intensive, medical advice, and just have a chat with each other.
It also provides special services for severely affected members who can't even use a computer - buddy penpal systems, and teddy bears. It even provides support to families looking after someone with ME.
Thanks for reading this far, and just one last thing!
Official ME Awareness Week press release:
Severe ME: Painful, devastating and debilitating
ME Awareness Week 2008 runs from May 9th–16 th 2009
Young people from the ’s largest ME/CFS children’s charity are raising awareness of the real impact of the debilitating condition, during ME Awareness Week, May 9th-16th.
This year The Association of Young People with ME, AYME is focusing on children with severe ME/CFS who are, or have been bed-bound in a darkened, sound-proofed room; tube-fed because they are too weak to chew; too sensitive to be touched; unable to talk and temporarily blind. Withdrawal from mainstream education leads to loss of contact with peers, social exclusion, isolation and loneliness. The need for 24-hour care also puts enormous strain and stress on the whole family.
There is no known cause or cure but we do know that early diagnosis can aid recovery and stop children declining into severe ME/CFS. AYME’s Chief Executive Officer, Mary-Jane Willows said: “We must stop children spiralling into this devastating world of severe ME/CFS. They need to be believed, given prompt access to ME/CFS specialists, diagnosed correctly and given the appropriate care and support.”
