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Adrienne Dellwo

Nail in the Coffin for XMRV & Chronic Fatigue Syndrome?

By May 4, 2011

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This will be unwelcome news for many, but a large and thorough study of XMRV in chronic fatigue syndrome just published in the Journal of Virology has turned up zero positive samples from people with chronic fatigue syndrome or healthy controls.

Many of the negative studies to come out in the last 18 months have been criticized -- and rightly so -- for claiming to debunk the original XMRV/chronic fatigue syndrome paper published by Lombardi et al, when in fact they fell short in many ways: they were rushed, they didn't use the same inclusion criteria, they didn't use the same collection techniques, they didn't use the same detection methods, control populations were too small, etc.  That lead a lot of people in the patient community to believe that once again, important research on this illness was being wrongfully and maliciously discredited.  The names attached to many of these studies brought the politics sharply into focus.

This study, however, identified the flaws with the previous studies. Researchers used both the Fukuda and Canadian criteria for chronic fatigue syndrome patients.   They used the same collection techniques and multiple detection methods, including those used by Lombardi.  Their control population was larger.  They tested samples used in Lombardi as well.  Their methods appear to be sound.

And still, they found no XMRV or other related MLVs.  None.

So what's at the heart of this?  What does it mean for XMRV research, and chronic fatigue research?

I'm anxious to hear what the Whittemore Peterson Institute (the group behind the Lombardi paper) is going to say about the new study.  I have to think most of the scientific world is now going to abandon XMRV/MLVs, which means any future discoveries will face a mountain of doubt.

I'm certain some people will add this as kindling to the conspiracy bonfires.  And while I have to admit there's been some shady work in the past, I don't personally believe that's what's going on with the latest study.  I'm sure that makes the long-timers think I'm naive.  I don't see the call for more XMRV research dying out any time soon, though, because people put a lot of hope and faith into it, and those are hard things to give up.  (See: What If XMRV Isn't the Answer?)

This new research concludes with a statement about the wealth of other promising viral research and how those areas must continue to be explored.  Only time will tell what happens there, but my personal belief is that we'll someday have proof that many different infectious agents, and combinations of them, are responsible for chronic fatigue syndrome.  Is a retrovirus among them?  Based on the specific immunological abnormalities in many, it certainly seems likely.  Is XMRV that retrovirus?  I hope we get enough solid research to say definitively either way.  I still hope that it is, but I'm no longer optimistic about it.

Here's more information about the latest study:

UPDATE: The WPI has issued a statement in response to the new study: WPI Response.

Moving forward, recent attention has helped make it clear to the world that chronic fatigue syndrome is a devastating and widespread illness that's tied to immune dysfunction.  XMRV isn't the only thing that gave it credibility as a "real" disease, and it's not the only direction in which scientists are looking.  If XMRV does turn out to be a dead end, it doesn't mean we're back to square one.

Does this study shake your faith in XMRV? Do you see political agendas behind it? Had you already given up on XMRV? Leave your comments below!

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Comments
May 4, 2011 at 1:59 pm
(1) carlos says:

“They used a clone. I can see nothing about positive clinical samples. In other words, an unproven assay. I will check with someone. But I am reasonably certain.”

“According to Vince’s blog, the authors agree that there is “still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS, and these efforts must continue.” Other infectious agents that deserve further research still includes HGRVs and other retroviruses, IMHO.”

“Singh is to be congratulated for admitting that her assays could not detect HGRVs in known positives.”

“None of the assays in Lombardi et al used qPCR. The results were based on Nested RT-PCR.”

“This will help you understand what is wrong with this paper: Please read: Validating an assay using clinically positive samples”: http://www.imeassoc.com/Validating_an_assay.html

“As part of this study, it seems that Singh tested two CFS patients from the Science paper and declared that neither had XMRV when the WPI has fully sequenced viral genomes from both. It also seems that Singh will not discuss her methodology with the WPI in order to reconcile the differences. Something feels wrong here.”

“Singh only tested two patients from the original science study. Unfortunately for her one of those patients was the source of a full length clone and EM showing viral budding!!”

HER ASSAYS DONT WORK THIS SHOULD HAVE BEEN MADE CLEAR IN THE STUDY

More discussion here: http://www.mecfsforums.com/index.php/topic,7136.msg84266/boardseen.html#new

May 4, 2011 at 2:34 pm
(2) Patricia Carter says:

This is just another 0/0 (0 HGRV in subjects; 0 HGRV in controls) paper that did not use WPI technology. They did not even look for MLV’s. All they have proven is that their assays did not work. Ho-hum.

This is definitely not the end of HGRV/XMRV research. I have been suffering with this disease for 25 years, and I look forward to more real research. It would be great is someone would do an actual study replicating the original WPI research published in SCIENCE in Oct. 2009. Why has this not been done? Could it be that it serves the purposes of the CDC and CFIDS Assn of America to keep a real replication study from being done?

I still believe the WPI research is definitive and that it should be honestly replicated.

Patricia Carter

May 22, 2011 at 4:09 pm
(3) Doug F. says:

Great thoughts there Patricia, what are MLVs (17 years) actually I’ve managed to fight this very well with, anti virals like Viracon (natural agents) as well as BioComand’s “systemic 4 (anti vlral and anti fungal) which I think is crucial. I notice that when my system is at it’s worst, I have bladder problems that mimic prostate enlargement but there is none and it goes down when I use an anti vlral that I haven’t used before such as the above listed or one I haven’t used for a couple of years so because of this observation, I thought the XMRV sounded like a very likely cause.

May 4, 2011 at 3:56 pm
(4) Lynn Tulumello says:

I think this is the answer right here. The WHOLE ANSWER…. I think we know what it is, but people are looking further and the answer is right here.
http://www.jaoa.org/cgi/content/full/107/6/218

May 4, 2011 at 4:02 pm
(5) Scott Betz says:

This study didn’t seem to find XMRV in anything. Was there in fact no XMRV or was the study incapable of finding it?

May 4, 2011 at 4:35 pm
(6) Omer says:

It would be unscientific to abandon this area before the BWG and Lipkin studies are completed and published.
There are many evidence against XMRV, but also strong evidence for XMRV – and forgetting about a retrovirus that might cause at least one disease would be a mistake that tens or hundreds of millions would pay for with their life and quality of life.
It’s better to “waste” more money and time and be sure to get the correct results (they just cannot be scientifically sure right now. The BWG and Lipkin studies should get them almost as closely as possible to being sure) than to save that time and money and miss a discovery that would save so many lives and people’s quality of life.

May 4, 2011 at 4:58 pm
(7) MissyD says:

It seems like so many people with CFS are heavily emotionally invested with XMRV. I am not surprised that the studies have not been replicated, and frankly I don’t care WHAT causes this illness. I don’t care if it is Psychological, Environmental, Viral, Bacterial, the result of some “component” “burning out”. I just want someone to find me a way to get well. I am encouraged about the differences found in spinal fluids and hope to see more research to investigate that area. I hope these XMRV studies are quickly replicated one way or the other, so that we can get on with it. It makes me very very angry when I here people criticizing or praising on theory or another – it is like they are so desperate to get a diagnosis of organic disease that they immediately seize on anything that sounds like it is viral. I am afraid that most people haven’t got a clue when it comes to clinical lab work, yet are quick to voice an opinion about methodology and/or lab practice. Whether you like the result or not, if it came from poor lab work the result is invalid. period. Lab failures however are necessary to move us forward.
Why do people think that it will be so easy to find a cause / treatment / cure, for such a disease affecting so many body systems. Ah, you know what – who cares anyway. I mean, who the hell cares. I sure as hell don’t expect to get well in my lifetime, and if I didn’t have my partner to look after me, I would be dying on a city street somewhere, homeless. As I say, who the hell cares anyway.

May 4, 2011 at 11:09 pm
(8) Cindy says:

MissyD,
I can so relate. It’s all so frustrating. The only thing I can say is that at lest someone is believing there is something going on and they are finally doing tests at all. Hang in there Missy D. I am in the same boat. If it weren’t for my partner I would be sitting on that street with you.

May 6, 2011 at 7:01 pm
(9) weeroo says:

And my partner gave up so I am nearing the streets, living off the charity of friends (that is wearing thin). Disability is my next step but I have to go how long without income?????????? And I never ever wanted to live off charity, I was the stong one!
I hate that this is an invisible disease and go out of my way to educate people. Maybe it will be easier on the next generation.

May 4, 2011 at 5:33 pm
(10) John Buettner says:

Were blind, known XMRV positive samples used to validate their test methods? Without this I don’t trust the results of any test.

I agree that other things need to be researched as well. Spinal fluid proteins seem to hold great promise, but will they just be ignored and forgotten like Ciguatera epitopes have been?

The link to Ciguatera epitopes has been known since at least 2003. I understand that somewhere on the order of 99% of people with ME/CFS/CFIDS will test positive for this.

An epitope is a fragment of an antigen capable of specific antibody binding. The implications thus far are that the CFS serum lipids resemble Ciguatera in every test done to date.

Why then has this fallen by the wayside? It seems that if nothing else, this is biological proof of a compromised immune system and could be used as a diagnostic test.

Google Ciguatera epitope and see what you find.

May 4, 2011 at 6:21 pm
(11) Adrienne Dellwo says:

John,

The researchers used 25 blinded patient samples identified as positive in the Lombardi studies.

May 4, 2011 at 6:36 pm
(12) John Buettner says:

Hi Adrienne,

Yes, but that only indicates they couldn’t find XMRV in any samples. They then conclude that if THEY didn’t find it, it wasn’t there.

KNOWN positive samples MUST also be used as this will test the test. I don’t believe this was done. If for example, 20 known positive samples were included, they would then be expected to report they found 20 XMRV positive.

As a test engineer, I know the value of testing your test, both positively and negatively.

May 4, 2011 at 7:44 pm
(13) aidan walsh says:

and the band played on…is this the final straw and is this the nail in the coffin…as i have always said, ‘there are other avenues of vital research that must be explored…obama, put that $25 million dollars into research that was on that ‘desert rats’ head, we are worth more than he ever was…by the way, osama bin laden did not have addison’s disease, he had gulf war syndrome or just another name cfids…that is a fact…the man was never really in hiding, he was floor or bedbound with cfids…he was not in any condition whatsoever to fight and he was extremely ill and as a result was in hiding…media never get the facts or print the truth and the same goes for medical research ‘lies’…sincerely and always the full truth…aidan walsh southampton, u.k.

May 4, 2011 at 7:44 pm
(14) Tony Mach says:

Singh notes there is “still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS, and these efforts must continue.”
http://www.virology.ws/2011/05/04/ila-singh-finds-no-xmrv-in-patients-with-chronic-fatigue-syndrome/

We’ll see how this continues. Maybe another retrovirus, maybe HERVs. This disease is anything but simple, but looking at other disease like MS, autoimmune and cancer, I think we need a paradigm change to get moving, and I fear we’ll don’t see that anytime soon.

But I’m hopeful that this XMRV-hunt will change the “standing” of CFS/ME/FM to a “real” disease for many more who work in research (and still had doubts), and that it will increase the flow of research money. I’m not expecting any wonders, but I’m slightly hopeful.

May 4, 2011 at 7:50 pm
(15) Tammy says:

I am one of those long-timers (40 years total), but I don’t think you’re being naive at all Adrienne. I don’t see any conspiracy, and do think these results, while perhaps not conclusive, are credible. After years of research on CFS, reading every journal abstract on Co-Cure each day for 15 years, following every research conference, running support groups that brought me into contact with hundreds of people with CFS, and trying everything in the book to treat my own, when I read the news about the WPI study, I thought, “Nope. That’s not it.” In my gut, it just didn’t resonate as the cause of CFS, though I agreed with the statement by the WPI then that it might be a coinfection (as mycoplasma, for example) in PWCS, rather than the cause.
After awhile, I started to be concerned that other worthy research that could lead us to testing or treatment might be getting shuttled to the side because of XMRV. The biggest disappointment I’ve had in my 40 years of having CFS (obviously, only the 20-plus of that had a diagnosis), was word that some of the research that I find most promising, that could give us: a) a test; b) evidence that CFS is more disabling than other illnesses with fatigue; and c)a way to test whether available, off label drugs can help, had, indeed, been “defunded” by a pharmaceutical corporation when it learned of XMRV. The company said it would be so much cheaper to just create a test for XMRV, it would just wait to see what happened with that. Fortunately NIH and DOD did fund some of the promising research. But I really do fear that we’ve lost 18 months because of XMRV.
XMRV research will continue, but this study means that other research won’t be shuttled to the side. I am probably the only person who feels this way, but I’m a bit relieved by this study, and it makes me more hopeful for our futures.

May 4, 2011 at 9:34 pm
(16) John Buettner says:

I just read an incredibly well written article by Paula Carnes titled “What Causes Chronic Fatigue Syndrome?” that is a MUST read. She puts it all together so clearly.

She shows how John Coffin completely contradicts himself by saying that XMRV is a recombinant of two mouse retroviruses. Then he goes on to say that XMRV is an endogenous retrovirus, a retrovirus that has integrated into human cells. He says it has been around a long time and is found in lots of humans with no effect on their health. But, didn’t find it in any of the samples he studied.

I urge you to read this yourself as I can’t properly convey it myself.

http://paulacarnes.wordpress.com/2011/05/04/what-causes-chronic-fatigue-syndrome/

May 5, 2011 at 6:56 am
(17) zac says:

Seems like a nice study. Wonder if they think no XMRV in prostate cancer, either.

May 5, 2011 at 9:45 am
(18) sue says:

this is such a huge blow. i shudder to think what will become of us long-term patients, now – those of us whose time is running out.

ila singh knows how to find this virus. she is on our side.

there are upcoming studies…gsk..univ of alberta, etc etc…but i suspect that will be more of the same.

i dont even know what to say. i am numb.

May 5, 2011 at 8:59 pm
(19) Angie Croix says:

(Part One)
If a scientist comes up with O/O then something is wrong if they were given
Positive samples..

I know people that hello> HAVE antibodies to XMRV and you literraly can NOT Grow those to any lab contaminant. If people already have antibodies then that tells me that this study did NOT do any Serology tests to even LOOK for them.

If they also have not received any vaccines since the 1970s then then the 1992 Coffin theory is a moot point.

Garbage in= Garbage OUT.
Show me a researcher that CAN detect Positive antibodies in Serologies in patients that have them and that ACTUALLY does a study that REPLICATES the Science paper
and then Maybe we will pay attention…

May 5, 2011 at 9:03 pm
(20) Angie Croix says:

(Part 3)

“If this were HIV, it would be 1983.” per Dr Frank Ruscetti.

AIDS is HIV, plus one co-infection.
Test Positive for HTLV and if you are sick~ YOU GET Treatment….

People that have XMRV+ antibodies and many co-infections get WHAT Treatment and are called WHAT ?

Here and NOW I declare it
“XMRV/AIDS2.0″ as we have 3 generations of sick people in families and their descendents also have Autism, Fibromyalgia and Lymphoma. What is that called>? NOTHING ?
XMRV is also reactive to hormones and can cause miscarriages.. My mother had 5 miscarriages before me and died of Lymphoma, now I am XMRV+ with antibodies..

We are Literally ignoring our own PANDEMIC that is wiping out our families health, bankrupting them, and hurting our countries economy.. Why are we NOT given ARVs or Immune Modulators ? FACT: There are Thousands that have already tested Positive and are VERY SICK. We would Love to be healthy like Magic Johnson that is HIV+ and takes his ARV drugs.. but we get NOTHING and are not even given the courtesy of a Name.. So we will name oursleves..

“XMRV/AIDS2.0″> the Next Generation
We ARE Here and that is a FACT.

May 5, 2011 at 10:28 pm
(21) John Buettner says:

You are so right Angie. Why can’t scientists believe science?

Instead we’re sentenced to exist in our own personal cells while life slips by us. I know it sounds crazy but I often feel jealous of people diagnosed with cancer. They are believed; they are treated; they are cared for.

Give me the ARVs – the ill effects can’t be worse than this and at least I’d have an ‘excuse’ for being ill.

I’ll trade it all for just 2 years of health before I die.

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