Friday, January 21, 2011

XMRV and ME

I've been laying low and quiet lately, focusing on striving to heal and on my kids and their schooling. This has been a particularly rough week physically, after a severe allergic reaction to airborne latex last weekend. (Some kids blew up a few latex gloves at a science competition where my kids were also competing and I almost landed in the hospital after just being in the same room. Still recovering and fighting asthma and sever weakness as a result.)

Today's a big day in the blogging world as ME/CFS patients try to raise awareness about XMRV and the link to Chronic Fatigue Syndrome. Since I don't have the energy to post a unique post myself, I'm using a "cookie cutter" post that someone else has put a lot of time and energy into writing for me. If you are a long-time followers of this blog, a lot of the information may be review, thought there are a few links I don't think I've posted before. If you are new to InfertilityMom, here's a great basic overview of what the excitement about XMRV is all about. From a personal perspective of why this is all so important to me, here's the link to a poem I wrote last year.

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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/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

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/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


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/note.php?note_id=160913563956987

10 comments:

2HopeForACure said...

Thank you for the information about XMRV and ME! I am hopeful for treatment for so many suffering from Neuro-Immune Diseases like ME/CFS, Fibromyalgia, Lyme's Disease, Atypical MS, and more!

Pat Mayer said...

Thank you for your beautiful blog, Jenni. You are always so generous with your willingness to help inform us.

Creek said...

Kudos to Jenni! I'm so sorry you're having to deal with that nasty latex reaction. Ugh! But you made the effort to spread the word today. You're a hero.

And now I hope some more heroes will come forward to support XMRV research.

Tina Tidmore said...

If the retrovirus turns out to be the cause, then the WPI scientists deserve the Nobel Prize.

Tina Tidmore said...

If the retrovirus turns out to be the cause, then WPI scientists deserve the Nobel Prize.

The Queen of Brussels Sprouts said...

I am going to forward this to a friend with Lyme.

Praying right now for you, precious friend.

CFS Facts said...

http://cfs-facts.blogspot.com/ has just posted for XMRV Bloggerama

Mrs. Mandy said...

I can not know what you struggle with every minute of every day but know I pray that the medical world sees the reality of these crippling disorders and takes them seriously. I pray for healing for you and all affected.
I have given you an award come by to pick it up whenever you feel up to it.
http://emptymelord.blogspot.com/2011/01/versatile-blogger-award.html

Tina Tidmore said...

Yes, who knows the implications. How could anyone have imagined a connection between ME/CFS and prostate cancer.

miriam said...

(((jenni)))