I have always been looking for that White Steed, I hoped that a handsome knight might be aboard, however it was not to be. Like Snow White I was stricken down, to be alive but not to live. I am still waiting for a Prince to cure me, to bring me out, out of my unlife. Years have passed 18yrs to be precise but no Prince arrived to kiss me awake, & bring me back to life yet there came hope, in another Shere murmurs grew out of a foreign castle, murmurs that I may not need to wait for that elusive Prince.
In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.
http://www.wpinstitute.org
http://www.sciencemag.org/
This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.
On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.
http://www.rescindinc.org/
http://www.cfscentral.com/
http://www.pnas.org/conten
http://www.pnas.org/conten
XMRV is similar to HIV, the retrovirus that causes AIDS.
Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.
For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org
If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/no
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Here are some links you might want to use:-
Key Scientific Papers & Related:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science http://www.sciencemag.org/
Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donorshttp://www.pnas.org/content/early
Aug. 23, 2010 – Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors PNAS FDA Press Briefing http://www.wpinstitute.org
Blood Donor Bans:
http://mcwpa.org/in-the-ne
Pertinent News & Blog Reports:
A Big Splash From an Upstart Medical Center New York Timeshttp://www.nytimes.com/200
New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/arti
Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters http://www.nih.gov/researc
The Lingering Mystery of Chronic Fatigue Syndromehttp://well.blogs.nytimes.
Exhausted by Illness, and Doubts http://www.nytimes.com/201
XMRV and CFS – It’s not the end http://www.virology.ws/201
Gearing Up for the Big Search for XMRV http://blogs.wsj.com/healt
Other XMRV Links:
Cleveland Clinic - 40% of patients with aggressive prostate cancer have XMRV http://www.plospathogens.o
XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphomahttp://www.wpinstitute.org
Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract http://www.cdc.gov/eid/con
COMPOSITIONS AND METHODS RELATING TO XMRV-RELATED DISEASES AND CONDITIONS http://www.wipo.int/pctdb/
Of mice and men: on the origin of XMRV http://www.frontiersin.org
XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway
http://esme-eu.com/news/xm
THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPANhttp://www.diagnosesupport
1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy & Infectious Diseases 2010_8. Abstracts http://regist2.virology-ed
Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.govhttp://www.ncbi.nlm.nih.go
A Third Pathogenic and Lymphotropic Human Retrovirus AIDS Review
http://www.aidsreviews.com
Great blog, so much information, may take me some time, but thank you for this, the WPI has given so much hope for all us sufferers, thanks chris x
ReplyDeleteGreat blog.....thank you. Hopefully, this will help truly educate others.
ReplyDeleteHopefull sharing this information will make a difference. I'm encouraged by how wholeheartedly bloggers have taken up the challenge to post about XMRV.
ReplyDeletethank you for taking your time and precious energy to bring accurate education on the matter of ME and the XMRV retrovirus. The governemnts need to take this very seriously for the sake of those 17 million who are already sick and to protect those who as yet are not.
ReplyDeleteLove the word pictures! Beautiful writing. :)
ReplyDeleteThank you for sharing the reality of the need for funding for XMRV research to help the millions of us who are so sick!
Great metaphor. Bedridden or housebound ME patients are indeed like Snow White, practically dead to the friends and family and coworkers who used to know and interact with us. We need thousands of knights in shining armor: if they each contributed just a little to the WPI, if they each contacted their elected representatives and demanded funding for XMRV research, and if they each helped educate others by sharing links to our blogs, we might get revived at last! Smooch!
ReplyDeleteBeautifully written...thank you so much for sharing!
ReplyDeleteIf the retrovirus turns out to be the cause, then WPI scientists deserve the Nobel Prize.
ReplyDeleteNow that's a nice opening line.
ReplyDeleteI also instinctively wait for the proverbial white knight (better be a female one though). A miracle. Getting better suddenly and unexpectedly just like I got suddenly and unexpectedly sick.
Thanks for the comprehensive summary on XMRV. I am amazed at the potential for new discoveries in this area.
We need to get all this out there....ane we are having a great day today....hope your knight in shining armour comes one day in the not to distant future Max...Jack.
ReplyDeleteEighteen years is 18 years too long...my heart goes out to you. And thank you for your kind comment on my own blog!
ReplyDeleteThank you for doing your bit to spread awareness. We desperately need funding for research; without it, 17 million people will remain sick and quite possible infectious. We need to know - the world needs to know.
ReplyDeleteI sometimes feel like the princess in "The Princess and the Pea." Literally, bruises show up on my legs without any seeming cause. The person I am on the inside is strong, determined, fearless. The body I am trapped in is sensitive, "It's too cold."
ReplyDelete"I have to have my sunglasses."
"Will there be someplace I can lay down if I need to?"
ugh.