I hate power outages. They're especially bad at night, but even during the day, I'm not a happy camper. No lights, no tv, no microwave....all that is frustrating, but the worst thing is - no computer!!!
Yes, somehow, the internet has become an integral part of my life. I run an online business, keep up with family and friends via email, play games, shop, read the news, etc. All in all, pretty typical.
Enter a relapse of ME/CFS a little over a year ago, which has confined me to my home most of the time, and I have found new pathways on the internet. I signed up for facebook, and there began to connect with high school friends I haven't seen in forever, and found some long lost friends I didn't think I would ever hear from again. But it didn't end there - somehow or other, and I don't remember quite how it started, I began to find others with neuroimmune disease. I became "plugged in" to a "community", where I have found friendship, understanding, support, information, and advocacy opportunities (not to mention lots and lots of laughter....who knew that sick people were so darn funny?!)
I'm sure this story is familiar, in some ways, to many of you. If you are sitting (or laying, as the case may be) in front of your computer, and reading this blog, well....you and I are among the fortunate ones. We are able to connect. We are not alone.
With 1 to 4 million Americans suffering from ME/CFS (as many as 17 million world-wide) how many are unable to connect? How many are alone? And how do we reach out to them? I don't have the answer to that, but I do know that every effort we make to educate others, every email we send to government officials, every dollar we donate to neuroimmune disease causes, every petition we sign, every comment we make on news stories...all of these things will perpetuate change.
If we just keep it up, I firmly believe that the day will come when the power will be back on for all of us!
Wednesday, March 23, 2011
Friday, January 21, 2011
XMRV: The retrovirus you'll be hearing more about.
It's like a best daydream, and worst nightmare, all rolled into one. The daydream is that the cause of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) would be found, the nightmare is that the ramifications of the discovery boggle the mind.
In the October 8th, 2010 issue of the journal Science, the Whittemore Peterson Institute published their discovery of a link between the retrovirus XMRV (xenotropic murine leukemia virus-related virus) and the neuro-immune disease, ME/CFS.
http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf
That's the daydream - finding a virus that could very well be the cause of ME/CFS. The nightmare begins with the list of other diseases that seem to be related to this same virus....prostate cancer, multiple sclerosis, Lyme disease, certain types of lymphomas, breast cancer, Gulf War Illness, autism....
This is a potential public health crisis, and there are many questions that need to be answered, and answered fast. Does XMRV cause disease? If so, which ones? How is it transmitted? How prevalent is it in the healthy population? What are the possible treatments available now? How quickly can new treatments, aimed specifically at XMRV, be made available?
ME/CFS has been left unchecked for over 25 years, allowed to spread until millions of people all over the world are ill. Now is the time to put serious money into the research. We need to get those questions answered!
Donations to the Whittemore Peterson Institute maybe be made here:
http://www.wpinstitute.org/help/help_donation.html
Links to more info:
blood donor bans:
http://mcwpa.org/in-the-news/blood-donor-bans/
XMRV and leukemia/lymphoma:
http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf
XMRV and prostate cancer:
http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025
In the October 8th, 2010 issue of the journal Science, the Whittemore Peterson Institute published their discovery of a link between the retrovirus XMRV (xenotropic murine leukemia virus-related virus) and the neuro-immune disease, ME/CFS.
http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf
That's the daydream - finding a virus that could very well be the cause of ME/CFS. The nightmare begins with the list of other diseases that seem to be related to this same virus....prostate cancer, multiple sclerosis, Lyme disease, certain types of lymphomas, breast cancer, Gulf War Illness, autism....
This is a potential public health crisis, and there are many questions that need to be answered, and answered fast. Does XMRV cause disease? If so, which ones? How is it transmitted? How prevalent is it in the healthy population? What are the possible treatments available now? How quickly can new treatments, aimed specifically at XMRV, be made available?
ME/CFS has been left unchecked for over 25 years, allowed to spread until millions of people all over the world are ill. Now is the time to put serious money into the research. We need to get those questions answered!
Donations to the Whittemore Peterson Institute maybe be made here:
http://www.wpinstitute.org/help/help_donation.html
Links to more info:
blood donor bans:
http://mcwpa.org/in-the-news/blood-donor-bans/
XMRV and leukemia/lymphoma:
http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf
XMRV and prostate cancer:
http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025
Subscribe to:
Posts (Atom)