a year ago today a landmark study linking CFS and the retrovirus XMRV (xenotropic; murine leukemia virus; related; virus) was first published in the prestigious journal 'science'.
a year ago today i didn't actually know what a retrovirus was. a year ago the idea of testing positive to an illness which counts AIDS and leukemia among its unenviable retrovirus companions would have been horrifying and terrifying. it still is, in many ways, but somehow the possibility of testing negative in the face of a new frontier of hope is scarier still. the devil and the deep blue sea...
so, a year on, what has changed? politics and egos appear to have gone into overdrive - but how much closer are we to answers? to the elusive cure? only time will tell. meanwhile patients are being led on an emotional roller-coaster ride, and the clock is still ticking away.
it makes me something far beyond angry to hear people in power playing politics with this, while millions of us lose more and more of our lives and continue to suffer. while the thought of others being exposed to XMRV in the meantime and potentially going on to develop this devastating illness makes my blood boil. this is not an issue that is just about the ME/CFS community, this is about everyone - XMRV has also been found in the general (healthy) population, blood supplies are not being screened for it at this stage and methods of transmission are yet to be fully understood. we all need answers so that we can make informed decisions. we need the scientific process to be able to evolve unhindered by government and personal agendas - to show what really lies beneath. and, if XMRV happens to turn out not to be as significant as many suspect, then we need to know this and move on.
i want the 'games' to stop. i want my life back. i want everyone with this illness to be able to enjoy a healthy body, to be able to live their dreams. and i don't want one more person on earth to have to live like this.
(i wonder where we'll be one year from today?)
a year ago today i didn't actually know what a retrovirus was. a year ago the idea of testing positive to an illness which counts AIDS and leukemia among its unenviable retrovirus companions would have been horrifying and terrifying. it still is, in many ways, but somehow the possibility of testing negative in the face of a new frontier of hope is scarier still. the devil and the deep blue sea...
so, a year on, what has changed? politics and egos appear to have gone into overdrive - but how much closer are we to answers? to the elusive cure? only time will tell. meanwhile patients are being led on an emotional roller-coaster ride, and the clock is still ticking away.
it makes me something far beyond angry to hear people in power playing politics with this, while millions of us lose more and more of our lives and continue to suffer. while the thought of others being exposed to XMRV in the meantime and potentially going on to develop this devastating illness makes my blood boil. this is not an issue that is just about the ME/CFS community, this is about everyone - XMRV has also been found in the general (healthy) population, blood supplies are not being screened for it at this stage and methods of transmission are yet to be fully understood. we all need answers so that we can make informed decisions. we need the scientific process to be able to evolve unhindered by government and personal agendas - to show what really lies beneath. and, if XMRV happens to turn out not to be as significant as many suspect, then we need to know this and move on.
i want the 'games' to stop. i want my life back. i want everyone with this illness to be able to enjoy a healthy body, to be able to live their dreams. and i don't want one more person on earth to have to live like this.
(i wonder where we'll be one year from today?)
Can't believe we have been living with this uncertainty for a year. Really hope this next year people will put their ego's aside and we will get answers. It has been the most scariest roller coaster I have ever been on.
ReplyDeletei think we're getting there...slowly (way too slowly). hope this wasn't too negative?
ReplyDeleteI am really hoping that in a year's time it will all be so different! I'm about to try a new doctor that appears to be much more proactive in treatment for autoimmune and fatigue conditions. I just tired of being so tired!
ReplyDeleteOh, and not too negative at all! I had never heard of this and a quick google search found some articles that said that it may also be a factor in fibromyalgia. Thanks for sharing the knowledge!
sending you the best possible dr vibes melanie...hope you find someone incredibly knowledgeable, understanding and helpful (actually, would be really interested to know who you're seeing).
ReplyDeletefibromyalgia definitely comes up over and over in the stuff on XMRV - to my mind it's there somewhere on the same spectrum as ME/CFS.