A scary title for this post! So let me first reassure my family that I am a long way from being this ill!
However, I think it would be remiss of me to keep an ME blog, and to not explore the darkest corners of the illness.
However, I think it would be remiss of me to keep an ME blog, and to not explore the darkest corners of the illness.
And when I talk about dark corners, that is really what I mean! The most severely affected cannot tolerate any light, noise or stimulation. They are suspended for years in a twilight existence of extreme discomfort and isolation.
All images by Greg Crowhurst
They are also largely ignored by the medical profession; not least because their illness is so poorly understood, but also because it goes on for so long, and nothing seems to help. It is as if they have been swept into some dark corner labelled "Beyond Help"!!
So why does this happen? Why is there not a bigger outcry?
Is this not every bit as scary as Cancer or AIDS?
So why does this happen? Why is there not a bigger outcry?
Is this not every bit as scary as Cancer or AIDS?
Part of the problem might be the media-spun view of ME patients as just "de-conditioned" or "run-down". Stories about ME tend to describe fantastic recoveries, and usually include a quote along the lines of: "But I was determined not to let this illness beat me!"
Do these writers really think that those left behind are LESS determined to recover?
Here, Greg Crowhurst who has cared for his severely ill wife Linda, for many years explains:
How can anyone believe that mere "determination" is sufficient for recovery?
So what about some more determination to find medical answers for the severely ill?
Those of us with mild or moderate ME may appear almost "well" during our better moments, and this can lull the world into believing that ME is not at all serious. Those with Very Severe ME do not ever escape.
Very Severe ME should be labelled a "Living Death Disease".
Alive, but unable to live!
Too long ill to be given attention by acute services!
Too inexplicably ill for General Practice to manage!
Too mis-portrayed by the psychiatric lobby to illicit public concern!
Severe ME must be ignored no more!
Please follow the links below, share this post widely, and join the campaigns online to spread the word about this darkest secret of ME!
August 8th is SEVERE ME AWARENESS DAY.
This year there is a campaign to Stop the ME Cover Up on the Stonebird website.
Participants are invited to take and share photos of themselves totally or partially covered up, with a message promoting awareness of Severe ME.
Further Information:
Stonebird: The Lived Experience of Severe ME
25% ME Support Group website
25% ME Support Group - Severe ME Day 2014
Black Dress Selfie Campaign also running for Severe ME Day 2014:
Just ME: Black Dress Selfie
Here, Greg Crowhurst who has cared for his severely ill wife Linda, for many years explains:
So what about some more determination to find medical answers for the severely ill?
Those of us with mild or moderate ME may appear almost "well" during our better moments, and this can lull the world into believing that ME is not at all serious. Those with Very Severe ME do not ever escape.
Very Severe ME should be labelled a "Living Death Disease".
Alive, but unable to live!
Too long ill to be given attention by acute services!
Too inexplicably ill for General Practice to manage!
Too mis-portrayed by the psychiatric lobby to illicit public concern!
Severe ME must be ignored no more!
*****
Please follow the links below, share this post widely, and join the campaigns online to spread the word about this darkest secret of ME!
August 8th is SEVERE ME AWARENESS DAY.
This year there is a campaign to Stop the ME Cover Up on the Stonebird website.
Participants are invited to take and share photos of themselves totally or partially covered up, with a message promoting awareness of Severe ME.
Please do what you can to help raise awareness of Severe ME.
******
Further Information:
Stonebird: The Lived Experience of Severe ME
25% ME Support Group website
25% ME Support Group - Severe ME Day 2014
*******
Black Dress Selfie Campaign also running for Severe ME Day 2014:
Just ME: Black Dress Selfie
