Petition - CAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize that the CAA is not our voice. 

As I said in my comment to the petition:

The CAA does not speak out in the interest of patients who are fighting to regain their lives (what's left of them) and those of their families.

There is no sense of urgency. Complacency disguised as an "inner voice" has left us in a state of failed health with no one to speak for change. Twenty years of Kim McCleary and a board who buys her philosophy of ignoring the patients has and will continue to cause grave harm. Despite obvious signs of patient dissatisfaction it's business as usual. Despite statements that the organization is small and "can't do everything" it moves at the pace the large institutions it should be fighting at every turn.

New patient organizations will forum and until such time as there is one willing to take the FIGHT to those ignoring our plight, it is time to recognize that that the CAA doesn't represent the patients.

The CAA doesn't speak for me and I would prefer it didn't speak at all.

Please participate in this grass roots collaboration!  The petition is here.

XMRV Bloggerama Day - My best shot

Grand Plans Scaled Back
I had great plans to write an original piece pulling from recent events and the science. Well this illness had other ideas and kept me awake nearly all night leaving my brain like so much jello.

Then it Hit Me
Plagiarize!  Not really but I'm going to provide links to some of the many great efforts made to commemorate the first of what I hope are many bloggerama days. 


The Time Is NOW
The ME/CFS community has a great opportunity to help itself like never before and advocates are showing us how.  The internet - especially Facebook (yeah XMRV Global Action), forums and Twitter mean we are connected in ways we could never be until recently.  Today we are working to fight invalid interpretation and press coverage of scientific studies.  Who would have though that possible a couple of years ago?  Please do what you can for the cause.  It doesn't have to be a blog but please make an effort to help the cause in some small way.  We have to be our own advocates.

Here a couple of highlights of but a few of the great blogs put up to commemorate XMRV Bloggerama Day:

Lilly Cooper - An Open Letter To Dr. Elizabeth Unger (link)

Lilly deftly demands the CDC turn it's back on it's sordid history and get it's research focused on bio-medical research rather than  the pseudo-scientific course it's pursued for more than two decades beginning with accusations of mass-hysteria.  Lilly has turned her talents to blogging lately and is doing a fantastic job.

Dr. Mary Schweitzer - The Relationship of XMRV to CFS and M.E. (link)

Dr. Schweitzer outlines her illness, including her symptoms and many abnormal test results.  She points out that her positive XMRV status is but one more abnormal test.  The story sounds so familiar.  She's lucky to be back on Amligen which helps her function at a greatly-improved level.  She points out that an appalling 85% of the ill are undiagnosed and concludes with the words "There are one million people [in the US] with some aspect of my disease, and 850,000 have no diagnosis. Of those who are diagnosed, only a handful are getting treatment. Where are the rest?"

Also, please consider joining the effort called Count Me In - Sick and Disabled Patients Help Raise Awareness of XMRV --- Because Many Lives Depend On It! (link)

The brilliant idea here, as conceived by advocates Maxine Middleton, Vikki Walker, Paul Kayes, Jo Best, is to give a little every month to the WPI to keep research coming. I've pledged to help.  Please consider joining.

Also a Great Big Thank You to Andrea Pring, the Organizer of Bloggerama Day!

That's all for my feeble little stab at a blog to help push back against those who would use science to harm us rather than help us.

Be Well,
Otis

Here's some background data, mostly for the benefit of Google. 

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 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/

____________________

Links and further information.

Key Scientific Papers & Related:

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donorshttp://www.pnas.org/content/early/2010/08/16/1006901107.abstract

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/news/docs/FDAbriefing_082310.pdf

Blood Donor Bans:
http://mcwpa.org/in-the-news/blood-donor-bans/

Pertinent News & Blog Reports:
A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

XMRV and CFS – It’s not the end http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Other XMRV Links:

Cleveland Clinic – 40% of patients with aggressive prostate cancer have XMRV http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025

XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphoma http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract http://www.cdc.gov/eid/content/16/6/1000.htm

COMPOSITIONS AND METHODS RELATING TO XMRV-RELATED DISEASES AND CONDITIONS http://www.wipo.int/pctdb/en/wo.jsp?WO=2010132886&IA=US2010035144&DISPLAY=DESC

Of mice and men: on the origin of XMRV http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway
http://esme-eu.com/news/xmrv-retrovirus-found-in-62-of-me-patients-tested-in-lillestroem-norway-article440-7.html

THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPAN http://www.diagnosesupport.com/health/index.php?option=com_content&view=article&id=305%3Athe-prevalence-of-xenotropic-murine-leukemia-virus-related-virus-in&catid=132%3Axmrv-research&Itemid=8

1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy & Infectious Diseases 2010_8. Abstracts http://regist2.virology-education.com/abstractbook/2010_8.pdf

Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.gov http://www.ncbi.nlm.nih.gov/pubmed/20842203?dopt=Abstract

A Third Pathogenic and Lymphotropic Human Retrovirus AIDS Review
http://www.aidsreviews.com/files/2010_12_2_121-123.pdf

An Introduction to ME In The World

Hello and welcome.  This is my first attempt at a blog and and this is my first, fledgling post.  I hope to cover news about M.E. otherwise known as Myalgic Encephalomyelitis or more recently Myalgic Encephalopathy, henceforth abbreviated as ME.  Here in the US, the illness is often known as Chronic Fatigue Syndrome which is the demeaning name the CDC gave this affliction in the 1980s.  That is probably either too much history (for those who know all of this or much, much more) or too little (those new to all this) but I'll leave it at that.

I really don't know what shape this little endeavor will ultimately take.  My initial idea is that posts will be pretty short with a post consisting of a news item and my take on the subject and perhaps some additional links for more info.  I'm not up physically or mentally to doing extensive pieces or doing something on a regular timeline.  I also opted to forgo any sort of planning or research into blogging tools, I just jumped into this thing so forgive me whileI learn as I go.  So those are the only apologies I'm a going to make. :)

Today's brief installment is on the FDA's Blood Products Advisory Committee (BPAC) December 14-15, 2010 meeting during which they will hear about the XMRV Blood Working Group (BWG) resnults, specifically 1:00-3:30 EST.  Written comments have been taken in advance of the meeting and live comments will be taken from 10:15-10:00 and 3:45-4:30.  Presumably XMRV-related comments will primarily occur during the latter comment period, depending on the number.

I expect the BPAC to make a recommendation to defer CFS donations as a "precaution" until more is known about XMRV and related MLVs.  I further expect to be disappointed by the level of information made available to the public about the storage and handling procedures (which perhaps could tell us something about the negative studies) and the assay results using actual blood samples from positive and and negative controls rather than spiked ones as was done in phase I.

Perhaps the CFIDS Association of America's webinar, the description which follows:

In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco will provide an update on the Blood XMRV Scientific Research Working Group studies, including results from Phase II, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the SRWG, will serve as moderator for the discussion.

For updates as the FDA meeting unfolds see this post at mecfsforums.com (registration required).

Publish Post

Alternately if there is a problem the widget below should capture in real-time Tweets from the same person.