This is my first blog entry but something I felt strongly about
I am on a few different me/cfs forums and I have to say some of the things I am hearing on the grapevine are sending a chill down my spine .Folk threatening to and encouraging other folk to join them in donating blood .This is not the first time I have heard this idea being banded about .
Giving blood or even threatening to is morally and ethically wrong and would probably do the me/cfs community as a whole more damage than good .It would certainly fuel the psychology brigades theories that we are all mad
This illness destroys lives , it is an illness I wouldnt even wish on my worst enemy. The problem we have is the fact that there are folk with xmrv in the general population who at this moment in time are blissfully unaware .
We should be advocating for better education , for pamphlets and leaflets to be made available in doctors surgeries and hospitals, for talks in schools to educate children ,ads in newspapers and magazines , positive actions not going to a blood bank sleeve rolled up .
Whatever actions folk take on this affect all the me/cfs community , folk will not appreciate actions which put them and there families in jeopardy. We are discriminated enough as a community , that would only become worse if folk start taking desperate actions like donating blood .Do we want to be treated like lepers ? Our kids to be bullied in schools ? I certainly dont .
Education is the key and that should be the message we should be getting across
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
someone replied to my above message on a forum by declaring that they thought everyone with ME/CFS should donate blood now and force the governments hand.
THIS IDEA IS INSANE my response is below
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
If you had sat on a childrens oncology ward for weeks on end watching children suffering , dying , having blood transfusions and other blood products such as platelets in order to keep them alive , you would not even contemplate such a barbaric idea .
Great Idea cure the little children of cancer but give them a deadly retrovirus instead . That goes for any other folk who have to have blood transfusions , havent the hemaphiliacs suffered enough already .?
By purposely donating blood regardless of if you know wether you are xmrv positive or not , you know that the cause of me/cfs is more than likely infectious .Also you would have to lie and say you felt well that day . Therefore if anyone became sick through the blood you donated you would be culpable .
You would be no better than a drunk driver who kills someone whilst pissed .
Not only that if you managed to donate blood and they then had to recall all the blood products donated in that time frame there would then be a blood shortage and folk who could have been saved by a blood donation would DIE
This is insane , I will not be party to such actions that would do more damage than good .
Could you honest to god live with yourself knowing that you had probably just given someone a death sentence .
Yeah me/cfs doesnt kill us quick but it does kill , this is sick and if it came to a point of law and someone died because of your actions you would be charged with murder not manslaughter because the intention was there .
------------------------------------------------------------------------------------------------------------------------------------------------------------------
I HOPE FOLK WILL SERIOUSLY CONSIDER ANY ACTIONS YOU ARE THINKING OF TAKING AND ASK YOURSELF THIS . WILL THIS HELP THE ME/CFS COMMUNITY AS A WHOLE?
WILL THIS PUT PEOPLE IN JEOPARDY?
ACTIONS LIKE DONATING BLOOD WILL DO MORE HARM THAN GOOD .
PLEASE I URGE EVERYONE TO KEEP IT REAL . YES WE ARE ALL ANGRY , YES WE SAY THINGS IN THE HEAT OF THE MOMENT BUT JUST TAKE A STEP BACK AND THINK FOR A MINUTE ......... IF I DID ANYTHING THAT GAVE SOMEONE ELSE A DEATH SENTENCE I COULDNT LIVE WITH MYSELF COULD YOU?
Our actions as a community should be constructive not destructive .
I am on a few different me/cfs forums and I have to say some of the things I am hearing on the grapevine are sending a chill down my spine .Folk threatening to and encouraging other folk to join them in donating blood .This is not the first time I have heard this idea being banded about .
Giving blood or even threatening to is morally and ethically wrong and would probably do the me/cfs community as a whole more damage than good .It would certainly fuel the psychology brigades theories that we are all mad
This illness destroys lives , it is an illness I wouldnt even wish on my worst enemy. The problem we have is the fact that there are folk with xmrv in the general population who at this moment in time are blissfully unaware .
We should be advocating for better education , for pamphlets and leaflets to be made available in doctors surgeries and hospitals, for talks in schools to educate children ,ads in newspapers and magazines , positive actions not going to a blood bank sleeve rolled up .
Whatever actions folk take on this affect all the me/cfs community , folk will not appreciate actions which put them and there families in jeopardy. We are discriminated enough as a community , that would only become worse if folk start taking desperate actions like donating blood .Do we want to be treated like lepers ? Our kids to be bullied in schools ? I certainly dont .
Education is the key and that should be the message we should be getting across
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
someone replied to my above message on a forum by declaring that they thought everyone with ME/CFS should donate blood now and force the governments hand.
THIS IDEA IS INSANE my response is below
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
If you had sat on a childrens oncology ward for weeks on end watching children suffering , dying , having blood transfusions and other blood products such as platelets in order to keep them alive , you would not even contemplate such a barbaric idea .
Great Idea cure the little children of cancer but give them a deadly retrovirus instead . That goes for any other folk who have to have blood transfusions , havent the hemaphiliacs suffered enough already .?
By purposely donating blood regardless of if you know wether you are xmrv positive or not , you know that the cause of me/cfs is more than likely infectious .Also you would have to lie and say you felt well that day . Therefore if anyone became sick through the blood you donated you would be culpable .
You would be no better than a drunk driver who kills someone whilst pissed .
Not only that if you managed to donate blood and they then had to recall all the blood products donated in that time frame there would then be a blood shortage and folk who could have been saved by a blood donation would DIE
This is insane , I will not be party to such actions that would do more damage than good .
Could you honest to god live with yourself knowing that you had probably just given someone a death sentence .
Yeah me/cfs doesnt kill us quick but it does kill , this is sick and if it came to a point of law and someone died because of your actions you would be charged with murder not manslaughter because the intention was there .
------------------------------------------------------------------------------------------------------------------------------------------------------------------
I HOPE FOLK WILL SERIOUSLY CONSIDER ANY ACTIONS YOU ARE THINKING OF TAKING AND ASK YOURSELF THIS . WILL THIS HELP THE ME/CFS COMMUNITY AS A WHOLE?
WILL THIS PUT PEOPLE IN JEOPARDY?
ACTIONS LIKE DONATING BLOOD WILL DO MORE HARM THAN GOOD .
PLEASE I URGE EVERYONE TO KEEP IT REAL . YES WE ARE ALL ANGRY , YES WE SAY THINGS IN THE HEAT OF THE MOMENT BUT JUST TAKE A STEP BACK AND THINK FOR A MINUTE ......... IF I DID ANYTHING THAT GAVE SOMEONE ELSE A DEATH SENTENCE I COULDNT LIVE WITH MYSELF COULD YOU?
Our actions as a community should be constructive not destructive .