• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

Status
Not open for further replies.
I also find reading much of this stresses me and makes me worse. I avoid any posts I see where the posts are of a derogatory nature. As mentioined above, I think it is a good idea to pm back and forth or perhaps start a new thread under a heading that those of us wishing to avoid argumentatative posts can clearly see and not even open

glen

Sorry about that. I definitely don't want to make you worse. I just want to see a discussion on the science on this thread. No more commentary on sexism in the world, people not understanding stuff. That kind of thing.

If I see more of it, I'm going to comment. If I don't, I won't.
 
If that finding works out I think there will be a more severe split that we thought; will 80% of the people on this Forum have XMRV? I wonder....if it'll be lower
I think the point Cort is making is about MLVs as well as XMRV.

If one assumes that at least some of the CDC's samples were stored correctly (they were taken at different timees including after Suzanne Vernon left), we have data from that group on the prevalence in another cohort - Switzer et al found 0% and Lo/Alter found 0%. Of course, I think most of the CDC cohort shouldn't be seen as CFS cases at all because of the empiric definition. But maybe around 10% are Fukuda cases although maybe high functioning. Cort is pointing we have data on these.

The numbers are small of course, once one throws out the patients who would satisfy the empiric (Reeves) criteria but who wouldn't satisfy the Fukuda or Holmes criteria.
 
[Color is mine.]
I can understand questions but some of this is just out of the ballpark.Where have I featured and propogated Tsoudero's article on XMRV throughout this website? I mentioned the two articles on the XMRV Buzz briefly and probably engaged in some posts on the Forums but that's it. That's not featuring or propogating that's reporting....

Trine Tsouderos wrote only one article about ME/CFS and XMRV. It ran twice in the Chicago Tribune, on 6/8 and again on 7/27. Though it appeared under a different title the second time, the article was identical, word for word, to the first one.

Many of us were surprised that Cort chose to feature this article on his "XMRV Buzz" page the second time it ran because it had already received considerable attention from Phoenix Rising. On 6/8, Cort wrote on his "Buzz" page, "Harsh Chicago Tribune Article - An article on the front page of the Chicago Tribune called "Hope Outrunning Science" paints Dr. Mikovits in a rather negative light."

Furthermore, a lengthy and impassioned discussion about the article took place on the forums in early June. During this discussion, one of the Phoenix Rising moderators compared Dr. Mikovits to the biblical figure Barabbas and predicted "her work will fall into ruin and her work will lie in the science rubble heap".

A number of us felt that Dr. Mikovits had come under heavy fire during this discussion, and that any further criticism of her was both unjustified and damaging to research prospects for the ME/CFS community. We were therefore taken aback and concerned when Cort chose to "report" Ms. Tsouderos' re-printed article as if it were brand new. On 7/28 he wrote,

Trine Tsouderos on XMRV and CFS (er Judy Mikovits) or "How Not to Speak to a Reporter" - Trine Tsouderos has written another hard-hitting article for the Chicago Tribune purportedly on XMRV/CFS but, like the last one, much of it is really about a researcher she percieves to be over the top - Dr. Mikovits.

He went on to devote four full paragraphs to an article that was highly critical of Mikovits and skeptical of XMRV research/treatment. If that's not "featuring or propagating" the ideas in Ms. Tsouderos' article, I don't know what is. Cort, did you feel that the Tsouderos article didn't get enough play the first time it ran?

For those who are interested, Hillary Johnson wrote an excellent, factual critique of the Tsouderos piece.
 
Alter found MLV-related retroviruses in 96% of a sub-group of his patient samples, and Judy Mikovits found evidence of MLV-related retroviruses (XMRV) in 97% of her samples. So this is, astonishingly, almost 100% for both sets of samples.

Alter found MLV-related viruses in 6.8% of the blood bank samples, and Judy Mikovits found MLV-related viruses in 3.8% of the healthy samples. So these percentages were exceptionally close considering the small number of samples tested.

The CDC found zero positive samples, for any MLV-related viruses, in either their patient samples or their healthy controls. i.e. the CDC study was a zero/zero study.

I can't believe for a moment that the CDC's results were anything to do with geographic, or diagnostic differences. This simply looks like a failure of methodology.

There is no point in the FDA testing the CDC's samples if the CDC's sample preparation methodology was flawed for the CDC study, as the FDA will also find zero positives in these samples.

When the CDC is able detect MLV-related viruses in the WPI's samples, and the FDA samples, then they might be getting somewhere. Until then, I think it is a good idea to give no importance to the CDC's studies, nor any test results that are published in relation to their samples.
 
Many of us were surprised that Cort chose to feature this article on his "XMRV Buzz" page the second time it ran because a lengthy and impassioned discussion about the article had already taken place on the forums in early June.

...

He went on to devote four full paragraphs to an article that was highly critical of Mikovits and skeptical of XMRV research/treatment. If that's not "featuring or propagating" the ideas in Ms. Tsouderos' article, I don't know what is.

You're equating four paragraphs(!), out of the thousands and thousands he's probably written on this site as "featuring or propagating" the ideas in Tsouderos' article?

That doesn't seem fair or reasonable at all to me, but I guess we'll have to agree to disagree.
 
The CDC found zero positive samples for any MLV-related viruses in either their patient samples or their healthy controls. i.e. the CDC study was a zero/zero study.
I can't believe for a moment that this was to do with geographic, or diagnostic differences. This was simple a failure of methodology.
What percentage of Fukuda cases do you think make up the average empiric criteria cohort from a community study? I reckon it could be around 7% http://www.retrovirology.com/content/7/1/57/comments#416675. Then consider that the Switzer study only used 51 samples, the Ho/Alter study only using 34 samples. Then remember that the average Fukuda patient the CDC finds in its community samples (pre-empiric criteria) works over 25 hours a week plus around 15 hours a week on chores (ref.: http://www.hqlo.com/content/1/1/48/figure/F2). It is quite possible it is simply a cohort issue.
 
Alter found MLV-related retroviruses in 96% of a sub-group of his patient samples, and Judy Mikovits found evidence of MLV-related retroviruses (XMRV) in 97% of her samples.
....

It's also true to say that Lo / Alter found MLV-related retroviruses in 100% of a sub-group and 0% of a sub-group: it all depends how you define a sub-group.

Which of Dr Mikovits' publications shows evidence of 97% MLV or XMRV infection?
 
I think the point Cort is making is about MLVs as well as XMRV.

If one assumes that at least some of the CDC's samples were stored correctly (they were taken at different timees including after Suzanne Vernon left), we have data from that group on the prevalence in another cohort - Switzer et al found 0% and Lo/Alter found 0%. Of course, I think most of the CDC cohort shouldn't be seen as CFS cases at all because of the empiric definition. But maybe around 10% are Fukuda cases although maybe high functioning. Cort is pointing we have data on these.

The numbers are small of course, once one throws out the patients who would satisfy the empiric (Reeves) criteria but who wouldn't satisfy the Fukuda or Holmes criteria.

Wouldn't see see some prevalence (perhaps not as large as 4-7%) in these samples? It seems to come up with zero we go beyond just cohort issues.

The other two options that occur to me for Lo/Alter coming up with nothing would have to include blood collection/storage and/or a problem with Lo/Alter finding XMRV. I do find it curious that Lo/Alter found no XMRV in:
- 37 CFS patients in their study
- 44 healthy controls in their study
- 34 samples from the Switzer study

Zero for 115 is pretty striking for XMRV alone.

If I accurately recall Lo's email to you, they found 0/34 (3 indeterminate) for the polytropic MLVs in the Switzer samples as well.

My unscientific slant is that Vernon's observation about the non-use of sodium heparin tubes could very well play a role in finding no MLVs in the Switzer samples. I'm not sure if sample swapping with the WPI (or others?) occurred and that is seems somewhat possible that Lo/Alter may have a sensitivity issue in detecting XMRV. If so, it could easily drive the overall positive rates north of 90% which would line up well with WPIs non-published numbers.

I recognize regional differences are likely but I'm not sure that can account for this drastic of a result. I certainly agree with Alter that we need larger studies - glad to know they're on the way.

ETA: I got my Switzer numbers wrong. Fixing....
ETA2: Changes made are in italics and Dolphin, I totally respect the math you've done - you've put a great deal of effort collecting and documenting the data. My perspective is not comparatively documented so it's a FWIW deal. I'm mostly interested in the XMRV slant on this.
 
Please see:

http://www.landesbioscience.com/journals/virulence/article/12486

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome
Judy A. Mikovits, Vincent C. Lombardi, Max A. Pfost, Kathryn S. Hagen and Francis W. Ruscetti
Volume 1, Issue 5
September/October 2010

Good point Sam. Seems like there's a glaring 'factual' error even in the summary of the article:

"In October 2009, we reported the first direct isolation of infectious xenotropic murine leukemia virus-related virus (XMRV). In that study, we used a combination of biological amplification and molecular enhancement techniques to detect XMRV in more than 75% of 101 patients with chronic fatigue syndrome (CFS)."

Uh...wasn't it 67%?
 
[...That doesn't seem fair or reasonable at all to me, but I guess we'll have to agree to disagree.

What doesn't seem fair or reasonable to me is twice devoting ink to an article that Cort had already stated "paints Dr. Mikovits in a rather negative light". Why would he feature Ms. Tsouderos' article on the "Buzz" page a second time if he didn't think her ideas about Dr. Mikovits should be in the spotlight--again?
 
Another thing to remember is that the controls in the CDC sample may not be like the blood donor controls. The CDC were screening them using both questionnaire data and also various testing and physician examination - I can't remember all the details now but I could well imagine that they got a more detailed workup than the other blood donors.
 
Please Consider a Graceful Exit

If you have a ground of understanding that only allows negative things to show up then you're not going to contribute to the type of discussion this Forum is devoted to and you should participate elsewhere. So long as you can interact with them or any other subject in a constructive manner then dialogue is fine. If you're simply bent on pointing out again and again what's wrong with them or another group or me or someone else - if your vision is so drenched in 'darkness' then that's all you see - then you're really not contributing to the Forum - you're damaging it . That is not 'dialogue' - that is simply you using the Forums to try and hammer your strongly held opinion onto it.

IUnfortunately it takes an enormous amount of time to rebut someone who is positional and soley bent on being right. Those people in other instances are called Trolls - they are disruptive posters who frequently appear to take the 'high ground' and mark themselves as the purveyors of correctness. They are bent on proving their point - nothing else. I don't think we need purveyors of correctness here. I think we need people who will look at all sides of the issues in an evenhanded manner and try to figure out what's correct.

awol,

It appears Cort is "inviting" you to leave this forum. I would like to second it. Why? Because this "disruptive and destructive" dialogue is highly unlikely to end, and it's hurting this forum. Most everybody here seems to want this to end as well.

Chalk it up to different styles, or different values, whatever. It seems clear there's going to be an ongoing clash until somebody leaves. Cort and Mark will be staying here. That's a given. I think those who disagree with them in a way that contributes to this ongoing clash would be best leaving, which I believe would be best for everybody.

Please consider a graceful exit.

Best, Wayne
 
What percentage of Fukuda cases do you think make up the average empiric criteria cohort from a community study? I reckon it could be around 7% http://www.retrovirology.com/content/7/1/57/comments#416675. Then consider that the Switzer study only used 51 samples, the Ho/Alter study only using 34 samples. Then remember that the average Fukuda patient the CDC finds in its community samples (pre-empiric criteria) works over 25 hours a week plus around 15 hours a week on chores (ref.: http://www.hqlo.com/content/1/1/48/figure/F2). It is quite possible it is simply a cohort issue.

If you add up all of the samples (healthy + normal) that the CDC tested, then you would expect at least between 3.8% and 6.8% to test positive.
This would surely have given them at least one positive sample, wouldn't it?
That's why I came to the conclusion that I came to.
I can't remember the total number of samples that they tested, but it would be enough to give us a few positive samples based on 3.8% to 6.8%.
 
What doesn't seem fair or reasonable to me is twice devoting ink to an article that Cort had already stated "paints Dr. Mikovits in a rather negative light". Why would he feature Ms. Tsouderos' article on the "Buzz" page a second time if he didn't think her ideas about Dr. Mikovits should be in the spotlight--again?

Sorry, I (and I'm just guessing -- hundreds if not more) missed that "spotlight". Why do you think he posted it? Are you suggesting that he's actively trying to dismiss a finding that may help HIMSELF and millions of others get better?
 
It's also true to say that Lo / Alter found MLV-related retroviruses in 100% of a sub-group and 0% of a sub-group: it all depends how you define a sub-group.

Which of Dr Mikovits' publications shows evidence of 97% MLV or XMRV infection?

In the published FDA paper, a specific group of samples was specifically mentioned which tested 96% positive (Those patients who had been 'rigorously' assessed by the research team.)
Judy Mikovits is recorded as saying that her samples tested 97% positive, in tests done after she published the paper.
 
Status
Not open for further replies.