The Evidence since 1954

This is by no means complete, as there are an estimated at least 3,500 pieces of documented literature speaking to the physiological basis for CFS/ME. But, it's a start, and cleary it states the obvious.

Documented involvement of Viruses in ME/CFS

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New Threat to US Blood Supply

From the Wall Street Journal today:

""We learned from HIV that we have to react aggressively to every next potential threat," says Michael Busch, director of the Blood Systems Research Institute in San Francisco and a member of a federally funded group studying whether the retrovirus XMRV, which has been linked to chronic fatigue syndrome, poses a threat to the blood supply.""


New Threats to U.S. Blood Supply

I notice they mention INTERCEPT by Cerus.

"The FDA declined to approve Intercept in the U.S. after a 2003 clinical trial showed a slight risk of a respiratory injury from blood treated with the system. Cerus Chief Medical Officer Laurence Corash says that in more than 75,000 transfusions in Europe there hasn't been any increased incidence of lung injuries with Intercept-treated platelets. The FDA doesn't accept European data. But Dr. Corash says the company is discussing "requirements for the size of a new clinical trial with the FDA, as well as preparing an alternative clinical study approach."

Since there was a successful trial of inactivating XMRV recently (Collaboration between WPI and Cerus), hopefully they will reconsider and look again at INTERCEPT.

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Car 54 - Where Are You??

"There's a hold-up in the Bronx, Brooklyn's broken out in fights; there's a traffic jam in Harlem that's backed up to Jackson Heights; there's a Scout troop short a child; Khrushchev's due at Idlewild...Car 54 - Where Are You?"

Ahhh There you are!! *cough*CDC*cough*

The CDC has published an article on .gov regarding an XMRV study. Although it does not focus on CFS patients, it does speak to the prevalence of controls, and how it concurs with the results of other studies with respect to a 3.7%'ish infection in controls. It references the WPI,CC,NCI study stating:

"Detection of XMRV in PBMCs and plasma of patients with chronic fatigue syndrome raises the possibility of blood-borne transmission; sexual transmission has also been hypothesized on the basis of indirect evidence"

The study concludes:

"Together with earlier observations on increased XMRV replication in RNase L–deficient cells (1,12), this finding implies that the immune system plays a role in controlling XMRV replication. It remains unknown whether immunosuppression predisposes a patient to secrete infectious XMRV from the respiratory tract or whether presence of virus might be meaningless for epidemiology in a way similar to HIV-1 (15). Future studies should address whether the respiratory tract might serve as a source of XMRV infection or whether immunosuppression might cause an increased risk for primary infection."

This 'could' be Very important in understanding why there were specific CFS related outbreaks.

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract

It's good to see the CDC show up to the party. A bit late, BUT still. I am thinking as they move towards understanding transmission rates, wouldn't their Best bet be to use a CFS XMRV +ve cohort to do so, since the XMRV prevalence is so high in them? Will they include immunoincompetent (ahem HIV) samples inhouse? Have they tested for XMRV against their HIV sampls already?

Stay Tuned for more Car 54 action packed episodes!

EDIT: XMRV in human respiratory tract (From Virology Blog) This article is much easier on the brain to read. It puts it in a context the non-medical professionals can understand.

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NOTE: For those not nearly as old as I am, Car 54 was a TV show in the 1960's that followed the 'madcap' adventures of two police officers stationed at the 53rd precinct in the Bronx.

From Wikipedia: Car 54

XMRV on Tour!

Unconfirmed sources tell of a late May tour by Dr. Peterson, Medical Director of WPI, to Europe and Sweden/ Finland.

XMRV - a novel retrovirus: What Doctor Should Know about it.

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WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Astonishing positive news about the blood bank safety issue.

WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Although, the article stated the recommendation and presentation will not be put before the AABB until October. Hopefully, they will address it sooner if we keep this alive in the media.

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Kenneth Feinburgh, we need you!

Who else is better suited to represent us for compensation from the health insurance industry? No one.

Compensation Czar Kenneth Feinberg

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Links to May 10ths 2010 CFSAC Speakers

Annette Whittemore

On video

Mary Schweitzer 

All public speakers

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X Rx Blog

Harvard/Einstein educated, and at one point, Assistant Director of the ED and Director of Urgent Care at Santa Clara Valley Medical Center. Dr. Jamie Deckoff-Jones blogs about her and her daughters' XRMV treatment using HIV Anti-retrovirals.

X Rx

I plan on referencing and steering my infectious disease doctor to her informaion. What's kinda sad, is that I HAVE to steer her towards anything conncerning XMRV.
 
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Where we aren't, anymore.

Today is May 12th. It is International CFS/ME Awareness Day.

I have watched it come every year for appx. 15 years of the 17 I have been ill with CFS/ME. I try to be involved, but sometimes it is just futile. I try to write letters; send emails. Usually, I end up watching it leave with a sense of defeat, and paying acutely and severly for the expended energy I seemingly used in vain.

Last year on October 9, 2009, Science published a study done between the WPI, CC and NCI. It detailed an association between CFS/ME and XMRV. There's so much information on this blog about this already, so I am by-passing the details.

For me, saying that the results of this study marked a watershed ping on the CFS/ME horizon of possibilities is an understatement. IMHO, this discovery has the potential to sever our being held hostage in an endlessly bleak and unfathomable CFS/ME nebula.  I feel we've never been closer to an answer, and possibly treatments. And if we can't make the world aware of us as much as we want today?, my wish is that all PWC's (Patients with CFS/ME) ON THIS PLANET are aware of what has changed towards the positive for us since October 9, 2009.

So, at 11:21 am, on this day of May 12th, 2010, I proclaim that we are on a New pilgrimage. We are rising up. We are strengthend with a restored covenant of new actualities; intent on manifesting our dreams of thriving in health and abundance, as is the right of every human.  Turn Left HERE!  Where we were has been blinked out of existence. It's in the stars people.


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Want to help?  Visit the Whittemore Peterson Institute and donate. ANY amount helps.

Positive ‘XMRV-study’ a matter of time

A dutch press release during the multi-day 'Centennial Retrovirus Meeting' conference in Prague.

Kick-back from Dr. Coffin on the XMRV/CFS non replication studies performed.

Can I just say, awesome.

ESME on Dutch Press Release

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