XMRV’s Big Test Has Begun: The Fed Study Ramps Up

April 9, 2010

Posted by Cort Johnson

Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we’ll see. It will surely clear up many of the questions surrounding the virus.

It’s a full bore effort; one that probably only the federal government could take on. Six labs will be involved – the Whittemore Peterson Institute, National Cancer Institute, the FDA, the CDC and two others (not mentioned in the article.)

They’ll be doing all the things that haven’t been done thus far; in the first phase they’re sharing samples amongst themselves to determine which tests are the most sensitive and reliable. Rather excitingly, the WSJ reports that that phase will be done in just a few weeks.

While they’re doing that they’ll also be testing about 350 samples of different types; some will be from CFS patients who’ve have tested positve for XMRV, other samples will be spiked with XMRV and others will be from healthy controls.

A Critical Factor: Importantly all the samples will be blinded; that is, the the codes will be held at a central location while the different labs determine which samples they think are XMRV positive. The codes will be broken and the lab that has the most accurate results ‘wins’ (or its test does). Blinding is the most critical test to pass in this process; the first retroviral discovery in CFS lost its way when the rigors of ‘blinding’ were introduced.

The third phase – if XMRV shows up then the group will start going through frozen blood samples from years past trying to figure out when XMRV entered the blood supply, what it’s done to people, etc.

A Solid Foundation - If XMRV can pass the ‘blind test’; ie if one of the labs can correctly identify samples with XMRV in then XMRV can proceed on a solid – one would think unimpeachably solid – foundation.

Simply finding the bug in a subset of CFS patients, of course, would be a huge boost to the field. Money would presumably pour in and ME/CFS would gain a legitimacy and recognition that it’s never had.

Consider the worst-case scenario if XMRV is found: XMRV is simply a passenger virus; it’s just along for the ride – it doesn’t appear to make CFS patients worse – it’s just there. Just the fact that it’s there in ME/CFS patients but is not present in the same percentages in healthy controls s
ays something rather profound about the health and immune systems of ME/CFS patients. Simply finding XMRV in ME/CFS patients should lead to a greater exploration of the viral element in the disease and a greater appreciation for the immune abnormalities present. Just that alone could shift the scientific communities focus on CFS – and that’s a worse case scenario (if XMRV is found)

XMRV’s big test is upon it. There should be no worries about ‘researcher bias’. Two ‘friendly’ labs, the WPI and the National Cancer Institute are involved. Patients who already tested positive for XMRV are included. The makeup of the rest of the CFS patients is not the critical factor here. The critical factor is the ability of the labs to pick out the XMRV positive patients – even if there were only a few of them. Once that is done researchers can look for XMRV in all different kinds of patients. Right now the goal is to find it in a blinded test environment.

6 comments

{ 4 comments… read them below or add one }

Linda and Roma Sarkar April 11, 2010 at 4:50 pm

To all of you who are involved in this very important study God Speed. We who have this frightening illness know we have a real illness and that it is not in our minds. We like you were all well and doing our part in society with our families until this illness struck. If it is not XMRV it is something else which is causing this devastating illness which has taken our lives away. We just want you all to continue the fight to find out what it is. Pleases don’t give up on us, you are our only hope. May God be with all of you and Thank you for taking part in a study which we hope will change our lives after 21 and 26 years of being so sick.

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Angie Croix April 12, 2010 at 11:14 pm

Cort,

Could you PLEASE give Ref: to the WSJ article and date published please. Do you have the link for it?
We might like to read the article in it’s Original form. Thanks.

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Cort April 13, 2010 at 9:37 am

I think I detected considerable frustration about that :) . My apologies – Here it is –
http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html?mod=googlenews_wsj

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Lisa Baldwin April 13, 2010 at 3:59 am

This family website – http://www.bringingryanhome.com- demonstrates what often happens when children are sick with ME/CFS. The children are treated like they or their families have a mental illness and are making up their illness. As a mother , wife, social worker and ME/CFS advocate that has been through a horrible ordeal -I can only educate from our experience and I can only hope and pray that the mystery will be solved . In the mean time please treat patients with the respect they so deserve and educate yourself on this illness . My son was treated worse than an animal and every right he had got somehow lost in a tangled system. He has also been SSA medically disabled since 2004.

Lisa Frattaroli Baldwin, BSW
Black Mountain, NC

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