The real story about XMRV coming out today?

The WPI continues to be one of a select group of people (CAA *EXCLUDED*) that is interested in finding a cure for what we've got. If you support anyone else, you're being had - there is nothing to debate about that. For actual rather than token debate and advocacy go to mecfsforums.

Its a little unsettling people come to the site with no connection to ME and say "nope ME is not caused by x, y, or z, you have no answers" and they don't even try to put a step forward to a different line of research. It is all so very strange....

I probably visit mecfsforums more now.

nielk is right. i read the smallest thing and feel like jumping out the window..i should really just stop reading altogether! what i think is that we have a retrovirus that needs an active herpes virus to establish CFS. maybe its not even a serious retrovirus but becomes serious after a long time of not being treated. thats what i think anyway lol

It does seem like we get occasional reports of the fine quality of debate and scientific analysis on the other forum... but the examples of it that are provided never seem that compelling.

Originally Posted by Christopher

The WPI continues to be one of a select group of people (CAA *EXCLUDED*) that is interested in finding a cure for what we've got. If you support anyone else, you're being had - there is nothing to debate about that. For actual rather than token debate and advocacy go to mecfsforums.

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Christopher,

mecfsforum is made up of scientists, medical experts, biologists? If they were genuinely "experts" they would not waste their time posting on forums. they would have more important things to do with their life. You don't see Mikovitz or Peterson posting there do you?

You make a statement and say there is no debate about this. Why? Because that's what the "experts" on the forum told you? I think right now everything is up in the air and none of us know what is really happening. there are too many conflicting reports and it's only with patience and analysis that we can come to an understanding of what's really going on.

Please don't come here to insult us.At least here, if we don't know the answer we don't make one up.

I spend time here because there are quite a lot of good informative posters. Also, this board focuses more on current treatment, which is a huge plus for me.

I am going to try hbot soon and will post on my results. That is constructive, and the results may help somebody decide in the future if they want to try that treatment.

As far as the WPI and the behavior of Judy Mikovitz with her pit bull mentality of I am right and everyone else is wrong, it's disgusting. Excuse me, who died and appointed her Queen? She is not only the epitome of unprofessionalism but also doesn't understand how Science works.

The Whittemores' have made money off of us by immediately putting out a test for XMRV and then turn around and say, oh wait the first test wasn't valid so here's another one and that test shows you suffer from contamination. They had an agenda because of a sick daughter and I can understand that from the perspective of being a mother, but unfortunately, it made them wear blinders when it came to the science. Do people really believe that patients are getting out of their wheelchairs, throwing away their crutches? Show us the evidence. They're no better than some of the sham fatigue centers and are a lawsuit waiting to happen.

But in the eyes of some, they will never do wrong.

There will be more information coming out in the next few days that will be very interesting.

I want my money back from their bogus test. :>)

what's wrong with being a skeptic about XMRV?

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barbc56 said:

But in the eyes of some, they will never do wrong. To those who have their heads in the sand and can't face the reality that XMRV is dead, keep on doing what you are doing, you're your own worse enemies.

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XMRV is dead, long live XMRV.

So who forced you to take the test Barb, everyone knew it was experimental?

Nothing wrong in being an XMRV sceptic. It's too soon to discount this as being a major find that will either turn out to be true or point the way to a very similar virus or family of viri.

We just don't know enough yet.

No one has pushed back CFS or ME science. What else potentially earth shattering was happening that missed out?

Patients have been a victim of a hate campaign around XMRV. You post is very hard on patients who haven't done anything wrong expect to want the proper science to be done on a potential find.

PokerPlayer said:

I spend time here because there are quite a lot of good informative posters. Also, this board focuses more on current treatment, which is a huge plus for me.

I do post constructive stuff Bob. I am going to try hbot soon and will post on my results. That is constructive, and the results may help somebody decide in the future if they want to try that treatment.

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Thanks for replying PokerPlayer - I can see that you didn't mean any harm.

Yeah - probably worth trying to avoid things getting personal for now. I was expecting things to be more heated here if the BWG results turned out negative, given how personally involved we all are, and how difficult all the uncertainty around CFS is. I know I've found the last couple of years pretty confusing and difficult.

Also, while inter-forum wars are great fun, and always really productive, now may not be the time. I'm sure that there are plenty of people who use both forums, getting something worthwhile from either, and we don't want to make those dirty rotten traitors feel uncomfortable here.

barbc56, I totally disagree with your opinions.

1. Over the past two years, an immense amount has been discovered about XMRV and other retroviruses, as a result of the WPI's and other scientists' research. All of the XMRV research gave us more information about the virus, and similar viruses, and so it was useful. Remember that XMRV is a real, if man-made, virus.
2. Other HGRV's might be implicated in ME. Mikovits, Lo and Alter have been investigating other HGRV's.
3. There are some good people on the other forum, with some valid scientific debate going on there. I am deeply uncomfortable with your sweeping personal attack on the forum, as I am equally uncomfortable with people attacking this forum.
4. Judy is doing science with passion. Personally, I am grateful for what she has done for CFS/ME. The WPI has raised the awareness of ME a hundred-fold. Yes, it looks like Judy got some things wrong, but that is normal for science. You could equally attack other scientists for their arrogance, but you single out Judy Mikovits. Whatever you think about the WPI, I think it would be hard to accuse them of corruption.
5. No one has made us look like idiots except Simon Wessely and his colleagues.

I understand your anger but, personally, I think it is deeply misdirected.


Whatever the outcome, I will still fully support the WPI, because they are committed to ME patients, and I am proud of them for what they have achieved in terms of international ME/CFS awareness. But obviously it is up to each individual whether they want to support the WPI or not, and I don't think it should become a subject for debate, because it has a real danger of being divisive.

Tissue reservoirs, anyone?

Judy didn't get it wrong. Silverman did.

asleep said:

You keep repeating this while missing a crucial aspect: it matters entirely what is being blinded. What you get out can only be a reflection of what you put in, and blinding only ensures the integrity of this reflection.

If you have a mix of positives and negatives labelled as "negative" and a mix labelled as "positive," blinding won't magically guarantee that all these "negatives" are actually negative and all these "positives" are actually positive. Instead you would get a mixed bag much like the WPI did in the BWG. Confusion in, confusion out.

This is why this issue of pedigreed controls is absolutely critical. The BWG appears to have done nothing more to ensure negativity of controls than screening with VP62-based assays. Ironically, the mountain of negative (VP62-based) papers have shown that this is a very inadequate means of designating controls.

Simply calling something a negative control based on known insufficient testing is not scientifically sound.

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This is from the supplemental information available online from Science (http://www.sciencemag.org/content/suppl/2011/09/21/science.1213841.DC1/Simmons-SOM.pdf):

Negative controls
Blood specimens were collected multiple times from three consenting laboratory controls under local IRB approval and WB, plasma and PBMCs were tested by all of the participating laboratories for XMRV/MLVs, using nucleic acid amplification testing (NAT), serology and virus culture techniques. In addition, twelve whole blood donations from local blood donors were unlinked and then separated into a buffy coat and corresponding plasma unit (Blood Centers of the Pacific, San Francisco). Aliquots of these twelve WB and plasma samples were distributed to five of the laboratories (CDC, FDA/Lo, NCI/DRP, NCI/Ruscetti, WPI) for similar testing. The working group unanimously concluded that all fifteen of these individuals were negative for XMRV/MLV.

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(bolding mine)


When you imply that the BWG weren't thorough, you need to remember that the BWG included the WPI. I think they were cognizant of the importance of pedigreed negative controls. At any rate, the WPI agreed that the controls were negative before they were blinded.

barbc56 said:

As far as the WPI and the behavior of Judy Mikovitz with her pit bull mentality of I am right and everyone else is wrong, it's disgusting. Excuse me, who died and appointed her Queen? She is not only the epitome of unprofessionalism but also doesn't understand how Science works.

The Whittemores' have made money off of us by immediately putting out a test for XMRV and then turn around and say, oh wait the first test wasn't valid so here's another one and that test shows you suffer from contamination. They had an agenda because of a sick daughter and I can understand that from the perspective of being a mother, but unfortunately, it made them wear blinders when it came to the science. Do people really believe that patients are getting out of their wheelchairs, throwing away their crutches? Show us the evidence. They're no better than some of the sham fatigue centers and are a lawsuit waiting to happen.

But in the eyes of some, they will never do wrong.

There will be more information coming out in the next few days that will be very interesting.

I want my money back from their bogus test. :>)

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Oh barb barb barb, you need to get your facts straight on pitbulls!

These dogs are known for tenacity in fighting, which is why they are abused and forced into organised fighting. They are also known for being family dogs and caring and protective. Helen Keller owned a pitbull. A pitbull called Seargeant Stubby was a decorated WW1 war hero. They were seen in North America as nanny dogs (rather like Staffordshire Bull Terriers).

If you think Judy Mikovits is tenacious- then yes, she similar to a pitbull. This is a good thing, and of course there are many tenacious 'scientists' out there. Professor Wessely could be said to be a pit-bull by his tenacity as well.

But dogs tend not to think they are right and everyone else is wrong. Although I think this is a silly characterisation of Mikovits- it is one that could theoretically be said of Coffin, Wessely, Stoye etc. if you are going to use it against Mikovits

All those negative papers and of the researchers who were mocked, ridiculed, defamed, libeled by various people of not following the 'scientific method' and not using the correct assays, reagents, primers, termperatures, calibration ad nauseam but in the end it comes down to this statement by Mikovitts and the WPI who couldn't detect it either in blinded samples. "The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood--not that they weren't in the patients at all," Mikovits says."

There is no contamination in our lab even though most retrovirologists considered the WPI as one big contamination site.
Mikovits There is no way of knowing how the plasmid got into those particular samples, says Judy Mikovits of the Whittemore Peterson Institute and University of Nevada in Reno, a coauthor on the original and the new papers. She says that the two-thirds finding may be called into question. But even considering the contamination problem, Mikovits says

Mikovits "I think we need to emphasise the point everywhere that XMRV was not the gammaretrovirus detected by the NIH and the WPI in the blood of people with ME it was another gammaretrovirus entirely."

Huh? What has she been telling the patient community for the last year and a half. Or is it now only with people with ME? Let's keep moving the goal posts folks.

The only people who can't find XMRV are the very people who were suppose to find it.

The labs that cant find XMRV in patient samples can find XMRV when it is there:
Of the nine labs that tested the samples, only one lab could not reliably detect XMRV in the positive controls (blank samples spiked with XMRV): The Whittemore Peterson Institute

Of the nine labs that tested the samples, only two found XMRV in any experimental samples (CFS and healthy controls):
WPI and NCI, the two groups that have published the 'XMRV-->CFS' Science paper.

Los group ('MLVs-->CFS' PNAS paper) called all experimental samples negative.

WPI and NCI 'found' XMRV at equivalent rates in the negative controls and the CFS patients:
WPI called 8/15 negative controls 'positive'. They called 6/10 of their own 'positives' positives. They called 5/5 Lo et als positives positive.
NCI called 10/15 negative controls 'positive'. They called 5/10 WPIs positives positive. They called 2/5 Lo et als positives positive.

WPI and NCI 'positive' results did not correlate:
WPI called Negative Patient #10 positive. NCI called Patient 10 negative. NCI called Negative Patient #13 positive. WPI called Patient 13 negative. Over and over.

WPI and NCI contradicted their own results:
WPI Patient #2-- WPI called this patient negative on 2/3 assays. Positive by one assay once, but not twice. NCI called Patient #2 negative on two assays.
WPI Patient #1-- WPI called Patient #1 negative. NCI called them positive on one out of two assays. But the 'positive' result was only positive 1/2 times the procedure was replicated.

XMRV is really dead.

Ecoclimber, I think what upset so many ME patients about some of these researchers who you say were mocked etc., was their bold and sweeping statements that XMRV did not exist in ME patients, based on their single study... It was the way they went about presenting their results that upset so many people, not the results themselves... It seemed to me almost as if they had some sort of motivation to prove that XMRV did not exist... I expect it was scientific egos at work. I honestly believe that if these researchers had just said "we cannot detect XMRV in our samples", then ME patients would not have reacted.

And remember how much we have discovered about XMRV. At first, many people thought it was just a false PCR reading. Then it was thought to be mouse DNA contamination. Then it was thought to be a mouse virus. Now we know that it is a man-made virus, that seems to contaminate almost every lab in the world. So even if it's only been useful research in a sense of pure scientific discovery, then it's been useful. But more than that, we will hopefully be able to protect lab workers from infection, and vaccines from contamination. So it seems to me that all of the research has been essential.

Judy Mikovits has been talking about HGRV's for more than a year now. She has avoided using the name "XMRV". So her position in that respect hasn't changed. She never liked the name "XMRV" partly because her sequences showed variation. She has been saying for ages that she is detecting various HGRV's. I agree that she has also been detecting a variety of XMRVs, and I expect that she will continue with that research.

I think she's been quite clear for ages that it wasn't wise to try to detect VP62. And that's not what she's been looking for. As far as I understand (but I might be wrong), she was not using a highly specific VP62 assay which is why she would not have been the most successful at detecting the spiked samples. She was hunting for a wider spectrum of HGRV's.

I do agree that XMRV research does not look like it's going any further.

But that doesn't rule out investigating other HGRV's.

Judy is going to continue in her hunt for human gamma retroviruses in ME patients.

I don't think that's a bad thing myself. I think it is a useful exercise. Whether it will be productive or not, we will have to wait and see.