Iw went to my docs surgery and hospital waerinf a face mask with XMRV on it in big red capital letters.
It sparked conversations with a few people including the woman taking my blood.
I did this last year, i remember thinking that the next time i go there it will probably be to get tested for XMRV. How wrong could I be, I think if you have the courage to wear anything that brings attention to the real possiabilty that this is in the blood supply, this is infectious and this is life destroying, DO IT.
No one gives a toss if yuo go away and die drip by drip, the quieter we are the less likely we are to get help.
I want the public to know, I have no idea how I became ill. I may have been born with-it, I may have got it from blood products, I may have got it from a vaccine.
I do know that I am furious that it is being ignored and even played down for those of us that have ME/CFS, and the fact that prostate cancer gets XMRV research funding and CFS gets yet another smack in the face, from the people with most to gain form keeping this under the control of psychitric peddlers of GET/CBT infurates me even more.
Its like having an invisble plague and being told to keep quiet about it.
Keeping quiet about it is what the authorities seem to want.
It has been stated somewhere I think by Wessley, that patients shouldn'yt join online communties, the same is also stated in a neurology magazine about MS.
The quieter and more ignorant we are the happier the authorities are.
ROCK THE BOAT and keep rocking it until it capsizes, it is not us that need the boat to float but the people that benefit from keeping us on it and isolating us from any help or support.
SHOUT FROM THE ROOFTOPS when ever you can, and when you'are shouting think of all those that can't shout, all of those that are unable tobe here with us on this forum.
One day that may be me, and Iknow I will wish I had not gone quietly, and I will wish that there are others shouting for me.
If thats enough to make you draw attentin to it and shout and create a fuss, then think of all those that are no longer here.
I am sick to death of being polite and getting no where.
Look what they do to the one Doctor in the UK that had helped us. Sara Myhill even with 100 patients tyrning up on the day to support her, and the many leters that were written, they still restrict her abilty to prescribe medications that she has researched and her patients have had great benefit from.
sory rant over, who knew i was that fed up with the waiting.
It sparked conversations with a few people including the woman taking my blood.
I did this last year, i remember thinking that the next time i go there it will probably be to get tested for XMRV. How wrong could I be, I think if you have the courage to wear anything that brings attention to the real possiabilty that this is in the blood supply, this is infectious and this is life destroying, DO IT.
No one gives a toss if yuo go away and die drip by drip, the quieter we are the less likely we are to get help.
I want the public to know, I have no idea how I became ill. I may have been born with-it, I may have got it from blood products, I may have got it from a vaccine.
I do know that I am furious that it is being ignored and even played down for those of us that have ME/CFS, and the fact that prostate cancer gets XMRV research funding and CFS gets yet another smack in the face, from the people with most to gain form keeping this under the control of psychitric peddlers of GET/CBT infurates me even more.
Its like having an invisble plague and being told to keep quiet about it.
Keeping quiet about it is what the authorities seem to want.
It has been stated somewhere I think by Wessley, that patients shouldn'yt join online communties, the same is also stated in a neurology magazine about MS.
The quieter and more ignorant we are the happier the authorities are.
ROCK THE BOAT and keep rocking it until it capsizes, it is not us that need the boat to float but the people that benefit from keeping us on it and isolating us from any help or support.
SHOUT FROM THE ROOFTOPS when ever you can, and when you'are shouting think of all those that can't shout, all of those that are unable tobe here with us on this forum.
One day that may be me, and Iknow I will wish I had not gone quietly, and I will wish that there are others shouting for me.
If thats enough to make you draw attentin to it and shout and create a fuss, then think of all those that are no longer here.
I am sick to death of being polite and getting no where.
Look what they do to the one Doctor in the UK that had helped us. Sara Myhill even with 100 patients tyrning up on the day to support her, and the many leters that were written, they still restrict her abilty to prescribe medications that she has researched and her patients have had great benefit from.
sory rant over, who knew i was that fed up with the waiting.
