The real story about XMRV coming out today?

[Ecoclimber]

Since this thread and this section of the forum is to keep the patient community informed on XMRV, I will post some information on here that has just surfaced which is now coming to light. This information was known to some a few months ago but the evolution of time and additional research has highlighted this fact that cannot be ignored. I don't like being the bearer of bad news.

I also believe that it does a disservice among the patient community by giving patients a false sense of hope without any foundation of scientific data/proof or research. To make connections of XMRV with other associated diseases and now HGRV as causing ME or other associated diseases without proper scrutiny by the scientific community on their proof/data or research, is outside normal behavior on the part of the institution and the scientists involved. I believe that the WPI and Mikovits should apologize to the patient community.

There is information and an accusation made by another blogger that is indicating fraud at the worse or sloppiness at the very least. This information was given to her by an unknown source. I do not know the source of the information but heard about it circulating among several retrovirologists.

I don't like linking to posts where bloggers have a certain prejudicial and adverse view to xmrv but this cannot be ignored and if the moderators wish to take the link down that is fine with me. At the same time this is not a conspiracy, innuendos or unsubstantiated rumors but indeed a scientist who wish to disseminate the information through Erv's blog. I do not know who the person is so don't ask me. I just know some of the background information.

Since Mikovits stated after the BWG study that there is no viable assay to detect XMRV within blood,..."The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood"... I hope that the WPI will refund the costs for the lab costs for patients who submitted their blood samples for testing.

http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php


I will also state that this illness may be caused by another retrovirus or HGRV but without any scientific data to back up this speculation, I could not emphatically with good conscience state this as a fact.

You can attack the data and information but I will not tolerate personal attacks as per forum rules based on the explosiveness of this information.

 

[ukxmrv]

This is ERV though Ecoclimber and many patients have given up trying to make sense of her ill-informed ranting blogs before. All publicity for her.

It's obvious that when Dr Mikovits said there was no reproducible assay that she meant that the BWG hasn't found one. That's a failure of the BWG and nothing to do with the WPI.

That's right the Blood, Working Group didn't manage to design a XMRV/HGRV test for the blood supply so we still cannot protect the population against this virus. That's the scandal.

I won't tolerate personal attacks either based on my failure to be surprised, gullible, eager to read ERV's blog again etc.

 

[Bob]

I believe that the WPI and Mikovits should apologize to the patient community.

I don't, but maybe we just have different perspectives.

However, I do believe that Wessely and Reeves and their colleagues should apologise to the patient community.

Since Mikovits stated after the BWG study that there is no viable assay to detect XMRV within blood,..."The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood"... I hope that the WPI will refund the costs for the lab costs for patients who submitted their blood samples for testing.

I agree that everything is a bit of a mess right now, but my understanding (and I might be wrong) is that everyone who signed up to a blood test, had to sign a contract where they agreed that the tests were exploratory, or for research purposes, and were not definitive and were not to be used for diagnosis.

I might have this completely wrong, but if it is correct, then it totally nullifies your post ecoclimber.
Maybe you should check the details out for yourself before you further perpetuate stories about the WPI being fraudulent?


edit: I've changed this post slightly because I made an incorrect statement about ecoclimbers' post.

 

[Ecoclimber]

I know some people may be upset about this but withheld this information when it came to my attention through a scientist a few months ago. I posted it now as apparently a confidential source revealed this to Erv. It was not Erv, Abbie Smith, that figured this out. All science must pass the scrutiny test by other scientists not from pseudo scientists or from lay people. I would expect that Mikovits and the WPI will respond to this. I also expect that there will now be an investigation as this is part of the research paper submitted. So we will have to wait and see on whether this can be verified by other scientists. This was put out here as FYI only and for each to determine the validated of the accusations. Character assassinations are just strawman or red herring techniques that are so conveniently used by others to discredit information that doesn't fit into their reality.

Ad hominem attacks to attempt to negate the truth of a claim by pointing out a negative characteristic or belief of the person supporting it does not fly. It is the proof of the information/data that should be scrutinize and evaluated not the person making the accusations.

 

[Esther12]

I've no idea if the ERV thing matters. It could have just been laziness in putting together a slide for a presentation. With XMRV, I'm not sweating the small stuff - if the WPI are or are not able to distinguish between CFS and control samples under blinded conditions, that's what matters. I'd be amazed if the WPI/Mikovits had been intentionally fraudulent over a matter that would clearly require and be expected to gain easy replication - even if they were utterly immoral and desperate to rip off patients, it's just not a sensible business plan. With psychology, there's a lot of wriggle room that can keep flawed theories in play for decades, with the claim that a certain test can detect a retrovirus at greater rates in CFS patients than healthy controls, it's relatively easy to put them to the test. The Whittemore's already had lots of money, and a sick daughter they wanted to help, and will not want their names attached to scientific fraud and ripping off patients. I can't see a remotely plausible motivation for them to do anything intentionally underhand.

That's right the Blood, Working Group didn't manage to design a XMRV/HGRV test for the blood supply so we still cannot protect the population against this virus. That's the scandal.

If this is an accurate quote from Mikovits:

"The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood"

I'd be surprised if that meant that she thought that she had a reproducable assay to detect XMRV. If she had being referring to others, and not herself, she'd have said:

"The conclusion of the Blood Working Group was that they don't have a reproducible assay to detect XMRVs in the blood"

PS: I'm quite happy to endure personal attacks, smears and threats of personal violence.

 

[Bob]

Edit: I've deleted this post because I made some incorrect statements about ecoclimber's post.

 

[Ecoclimber]

Bob I am not referring to the lab costs involving the BWG but the lab tests that were conducted at the time at VipDX where any patient could send in their blood samples for testing.

I am not accusing the WPI or Mikovits of fraud one way or the other. Sigh...PLEASE READ carefully what I wrote. All I did was post or relay information from another post that has some credibility to it. "There is information and an accusation made by another blogger that is indicating fraud at the worse or sloppiness at the very least. This information was given to her by an unknown source. I do not know the source of the information but heard about it circulating among several retrovirologists."

It was Erv herself who stated "Am I magic...?...or is this a case of arrogant, bold-faced, lazy-ass scientific fraud perpetrated by an apparent pathological liar? You be the judges, ladies and gentlemen."

I doubt she would post such information without clear cut evidence from her source.

Nor do you comment on the statement of making association with other diseases without any scientific data/proof or research. That worries me when a scientist makes such claims. It gives a false sense of hope. Now the autism group is upset with the BWG findings. Now people are claiming HGRV causes ME. It seems to me that such outlandish statements are made without any scientific data/proof or research which only sows seeds of division and disharmony among the patient community.

At any rate, I am sure an investigation will be made which will either substantiate or nullify the claims. The truth will eventually come out.

 

[leela]

I have not seen any ad hominem attacks against you, Eco (although I admit I cannot follow this thread closely as I don't have the energy for arguing) so I apologise in advance if you have received that here.

I just wonder how it is you point us to a link that is rife with character assassination etc when you are so (rightly) adamant about not tolerating
that kind of speech.

I find this confusing and I hope you have not personally received crap from people on this thread. But if you truly don't tolerate abusive, nasty,
personal attacks, please reconsider linking to sites that expressly do it.

Character assassinations are just strawman or red herring techniques that are so conveniently used by others to discredit information that doesn't fit into their reality.

Ad hominem attacks to attempt to negate the truth of a claim by pointing out a negative characteristic or belief of the person supporting it does not fly. It is the proof of the information/data that should be scrutinize and evaluated not the person making the accusations.

 

[Ecoclimber]

Sigh...throw up hands....I pointed to a link that would provide information for your evaluation that is all. Each patient can decide for themselves how relevant that information is concerning the debate on xmrv. You don't have to read the comments. This is how science works. You look at all viewpoints including opposing viewpoints in order to make an informed judgment on this.

I admit there is so much disinformation swirling around the this issue and for some it threatens their personal reality of the issues. All I ask for is an open mind and apologize if this information is discomforting for some.

You can follow another blog by Professor Vincent Racaniello that discussed the controversy surrounding xmrv etc.

http://www.virology.ws/2011/09/29/admit-when-you-are-wrong/

or HERE:

http://www.virology.ws/2011/09/27/trust-science-not-scientists/

 

[Bob]

I am not accusing the WPI or Mikovits of fraud one way or the other. Sigh...PLEASE READ carefully what I wrote. All I did was post or relay information from another post that has some credibility to it.

Oh yes, I misread you. Sorry. And thank you for sighing at me.

Even so, it's still a detail that needs to be checked out if this information is going to be perpetuated.

@Bob I am not referring to the lab costs involving the BWG but the lab tests that were conducted at the time at VipDX where any patient could send in their blood samples for testing.

Yes, I was refering to the same... The VipDX patient blood tests...
I might be wrong, but I heard that a contract had to be signed.
It's quite possible that the person who said it was getting the two confused though.

Nor do you comment on the statement of making association with other diseases without any scientific data/proof or research. That worries me when a scientist makes such claims. It gives a false sense of hope. Now the autism group is upset with the BWG findings. Now people are claiming HGRV causes ME. It seems to me that such outlandish statements are made without any scientific data/proof or research which only sows seeds of division and disharmony among the patient community.

Yes, I agree that some of their information does seem to be somewhat premature.
But I put this down to eagerness and enthusiasm to find a cure. They are human after all.

And ecoclimber, the WPI are not alone in making premature claims in science.
I have to say that I've not been impressed with a load of scientists since following this saga, and i've seen many much more outlandish claims made by scientists over the years.

One example of similar claims is the many researchers who have stated that there is no association between XMRV and ME, based on their one negative study which only tested blood. This seems to be equally premature to me.

In my personal opinion, the WPI are honestly and enthusiastically following the best science that they can do, for the good of ME patients.
And this is a lot more than can be said of many CFS scientists that we've had over the years.
If you've been following the PACE Trial, then there really is some bad, misleading and fraudulant science in action.

So I don't really understand why people can get excited about giving the WPI a hard time. I really don't understand.
I get far far far more worked up about the PACE Trial.


Edit: I've deleted a line... I had over-interpreted your post as giving the WPI a hard time.

 

[Ecoclimber]

Bob Yes I agree with you totally on this. I think the Pace Trail is absolutely reprehensible on the ME/CFS patient community in the UK. The UK does have an agenda promoted by Wessely that has no basis in science or fact. Unfortunately some of those thought patterns are drifting over here. I'm fighting hard to dispel those myths but with all this controversy swirling about, it makes it extremely difficult. I believe that we are very close to finding biomarkers for this illness so we can dispel this controversy.

 

[Bob]

@Bob Yes I agree with you totally on this. I think the Pace Trail is absolutely reprehensible on the ME/CFS patient community in the UK. The UK does have an agenda promoted by Wessely that has no basis in science or fact. Unfortunately some of those thought patterns are drifting over here. I'm fighting hard to dispel those myths...

Ah, there's something that we can all agree on, and could all work together on...

I believe that we are very close to finding biomarkers for this illness...

Well there's something else that we can all agree would be good for our community...


We'd better be careful... or this brief spell of forum harmony might catch on!

 

[RustyJ]

@Bob Yes I agree with you totally on this. I think the Pace Trail is absolutely reprehensible on the ME/CFS patient community in the UK. The UK does have an agenda promoted by Wessely that has no basis in science or fact. Unfortunately some of those thought patterns are drifting over here. I'm fighting hard to dispel those myths but with all this controversy swirling about, it makes it extremely difficult. I believe that we are very close to finding biomarkers for this illness so we can dispel this controversy.

Eco, while we appreciate your efforts to keep us informed, I am worried you might overdo things. Take a load off, stop posting for a while till you get your strength back. We can always read up on your team's progress at Racaniello and ERV's blogs.

As regards biomarkers, if I had a dollar for everytime I read a study saying they had found biomarkers I would be rich. Your information does not have the impact you perhaps think it does. There are at least two other groups with current claims to biomarkers (three, if you count Tate's work in NZ, which is, like WPI's, focussed on a viral cause). Find us a cause, not your new perspective on symptoms.

 

[leela]

Sigh...throw up hands....I pointed to a link that would provide information for your evaluation that is all. Each patient can decide for themselves how relevant that information is concerning the debate on xmrv. You don't have to read the comments. This is how science works. You look at all viewpoints including opposing viewpoints in order to make an informed judgment on this.
/[/URL]

Eco, I agree with you 100% on this. What I am pointing out is that this is not science--

"..or is this a case of arrogant, bold-faced, lazy-ass scientific fraud perpetrated by an apparent pathological liar?"

--it is the very kind of invective that you were adamant about when posting the link. Maybe I read you wrong and you were apologising in advance for the tone of the article?

Either way I swear to everything holy I am not trying to pick on you. I am trying to say that I prefer to glean info from sources that do not engage in this sort of sarcasm and hijinx; and to be honest, I can't even get to what she is trying to say through the obnoxious tone of the whole blog, which tends to cast a pall on the credibility of the info presented, IMO.

Eco, I welcome a thorough, even-headed evaluation of this and all information. I wish this could be carried out calmly and without personal attacks and misunderstandings. Unfortunately humans are strange and complex creatures, much like retroviruses

 

[Bob]

Since Mikovits stated after the BWG study that there is no viable assay to detect XMRV within blood,..."The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood"...

I haven't read the blog that ecoclimber points to, but the issues in this quote from ecoclimber's post is likely to confuse the hell out of patients who have tested positive for XMRV.

Even I don't understand what's going on right now, and I've been following the XMRV story as closely as anyone.

 

[leela]

From my understanding that quote refers to the BWGs attempts to create a high-throughput assay for the blood supply.

http://forums.phoenixrising.me/showthread.php?13863-Dr.-Mikovits-answers-my-mail-Something-important

It comes from omer's thread in which he asked Dr M about Trizol etc and she answered:
"The blood working groups' goal was to develop assays to test the blood supply as it is..that means plasma and whole blood and buffy coats..The results do not say that HGRVs are not in the blood (it) simply (says that they are) at levels too low to detect in the samples as they are saved in blood banks world-wide. This was not a study to determine the association of XMRVs/HGRVs to disease..it was intended to determine if the blood supply is safe
The Lipkin study will use all the collection procedures exactly as we specified..and that study will determine the association."

 

[Bob]

From my understanding that quote refers to the BWGs attempts to create a high-throughput assay for the blood supply.

http://forums.phoenixrising.me/showthread.php?13863-Dr.-Mikovits-answers-my-mail-Something-important

It comes from omer's thread in which he asked Dr M about Trizol etc and she answered:
"The blood working groups' goal was to develop assays to test the blood supply as it is..that means plasma and whole blood and buffy coats..The results do not say that HGRVs are not in the blood (it) simply (says that they are) at levels too low to detect in the samples as they are saved in blood banks world-wide. This was not a study to determine the association of XMRVs/HGRVs to disease..it was intended to determine if the blood supply is safe
The Lipkin study will use all the collection procedures exactly as we specified..and that study will determine the association."

Thanks Leela... I'm suffering from information overload!!!

I guess I'll just have to wait and watch the rest of the research unfold.

 

[leela]

Thanks Leela... I'm suffering from information overload!!!

Join the club! Add to that the frazzled neurons, and, well, just wake me when it's over!

 

[RustyJ]

Good reminder Leela. I think it is important to note that this is documentation of Mikovits' response, not just second-hand interpretation as some of the other points being made seem to be. And as such I would give it more weight.

 

[biophile]

Claims of evidence that Mikovits is a fraud?

http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php

Does this need explaining? Basically, blogger ERV shows that a figure from the original 2009 Science paper was reused by Mikovits as a slide at the IACFS/ME 2011 conference to represent different data, possibly indicating fraud (edit: or sloppiness). I'm not passing judgment either way yet, I'm interested in what others have to say about it.

EDIT: Oops, this has already been raised in previous posts that I didn't read yet.

There is information and an accusation made by another blogger that is indicating fraud at the worse or sloppiness at the very least. This information was given to her by an unknown source. I do not know the source of the information but heard about it circulating among several retrovirologists.