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NIH/FDA XMRV Paper by Dr. Alter Out!

George

waitin' fer rabbits
Messages
853
Location
South Texas
Yeah, (sheepish grins) I think we broke PR there for a while. It looks like the early reports are placing and emphasis on the fact that this is no big deal, just some MLV's ( which nobody is going to know what they are) and there may or may not be a a connection to those tired people. Butttttt

As Cort pointed to Mindy's Blog which is much more detailed and states more facts in regards to MLV's and Dr. Alter's take that XMRV is highly mutative so they are looking at MLV sequences when they look. Same virus just different or more mutation than first reported. Alter sounds convinced that this is "it" for CFS at least. The good news is we do know that there are a lot of other studies that have been done that will take us in the right direction down the road.

I'm just tired, I was hoping this would be the big turning point in the media ya know? The opportunity to take article after article in to my doctor and say "HA, there ya go" (grins) It's been nearly a year since the first study and I'm tired of media management and I'm tired of healthy people making discussions that affect my life. So I'm cranky. (grins) Smiling, but cranky.
 

pine108kell

Senior Member
Messages
146
I'm not at all disappointed by this.

I never expected them to come out with a sincere apology for CFS patients and a promise to hold those responsible for the quackery we've had to endure for the last 20 years accountable.

This is a good day for everyone with CFS. Try to enjoy it imo.

Exactly, this was published in a peer reviewed science journal, not a blog.
 
Messages
5,238
Location
Sofa, UK
I don't understand what is causing people to be upset. Please tell what you thought was going to be reported. This was a replication study.

I think it's the subtleties of the language used in the press release. It is still going to cause a big splash within the scientific community, and it'll be the huge step forward in terms of the science that we were hoping for. But the cautious language and muddying of the waters re:MLVs vs XMRV look to me like it won't yet spark the media interest we were hoping for.

I rather suspect that whether something is a "related MLV" or an "XMRV variant" is something of a question of where you draw the line, somewhat arbitrary. By saying that what they detected wasn't really XMRV as such, they excuse all the negative studies, and also downplay the replication of the WPI - it looks less like 2 papers that both found the same thing, and more like two papers pointing in a similar direction. Just feels a bit less conclusive, even though when you think about it, it isn't really.

In short, it's been spun so that only those in the know will realise what it means, giving them more time to prepare.
 

HowToEscape?

Senior Member
Messages
626
"It's a retrovirus, people, doesn't that bother you AT ALL?"

Edit: My post below isn't quite germane to the topic of the press release and response. I'm leaving it up fwiw, just to vent. A bit.


People are concerned over things that either

i) catch their imagination so that they feel like part of it - "ground zero mosque" etc
or
ii) affect them personally.

Items of type ii have 90% share of attention. e.g. HIV - if one has a life or has teenagers one might possibly catch it. xmrv? for most people, that's "whatevs" ... "if it's been around 20 years and I haven't caught it yet, what's the problem"?

Not everyone thinks that that, but if you randomly pick someone off the street and read their mind - not words on camera, as people know what they're expected to say - you'll get a shrug about most things they don't have a personal stake in.

Beyond that this really is a complex, confounding disease. It could also be that it is XMRV==CFIDS/ME, full stop, it could also be that v+w+xmrv==you get sick, or some multiple factors. But whatever xmrv does I don't want it sneaking around my cells!
 

LaurelW

Senior Member
Messages
643
Location
Utah
:Sign Please:Could somebody please explain the difference between MLVs and XMRV? I don't get it, even after reading Mindy's blog. Also, what the possible implications of this are.
 

LJS

Luke
Messages
213
Location
East Coast, USA
Awesome, Thanks for the link!

EDIT: I figured I would post the abstract up for fun

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
1. Shyh-Ching Lo
2. Natalia Pripuzova
3. Bingjie Li
4. Anthony L. Komaroff
5. Guo-Chiuan Hung
6. Richard Wang
7. Harvey J. Alter

Abstract
Chronic fatigue syndrome (CFS) is a serious systemic illness of unknown cause. A recent study identified DNA from a xenotropic murine leukemia virus-related virus (XMRV) in peripheral blood mononuclear cells (PBMCs) from 68 of 101 patients (67%) by nested PCR, as compared with 8 of 218 (3.7%) healthy controls. However, four subsequent reports failed to detect any murine leukemia virus (MLV)-related virus gene sequences in blood of CFS patients. We examined 41 PBMC-derived DNA samples from 37 patients meeting accepted diagnostic criteria for CFS and found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors. No evidence of mouse DNA contamination was detected in the PCR assay system or the clinical samples. Seven of 8 gag-positive patients tested again positive in a sample obtained nearly 15 y later. In contrast to the reported findings of near-genetic identity of all XMRVs, we identified a genetically diverse group of MLV-related viruses. The gag and env sequences from CFS patients were more closely related to those of polytropic mouse endogenous retroviruses than to those of XMRVs and were even less closely related to those of ecotropic MLVs. Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply
 

V99

Senior Member
Messages
1,471
Location
UK
If the new term HGRAD is the mum, then XMRV and MLV's are the children. In other words the same type of retrovirus, i.e. a gammer retrovirus, but different branches from this, and all from mice.

This is no different then finding XMRV
 

anne_likes_red

Senior Member
Messages
1,103
If the new term HGRAD is the mum, then XMRV and MLV's are the children. In other words the same type of retrovirus, i.e. a gammer retrovirus, but different branches from this, and all from mice.

This is no different then finding XMRV

*likes* :)
Thanks V99.
 

V99

Senior Member
Messages
1,471
Location
UK
because there is an XMRV, and there are MLV's. XMRV would probably be thought of as another MLV if it had not come first.
 

Cort

Phoenix Rising Founder
Here's what I wrote in the XMRV Buzz Page

Its strange but think its going to all work out.

http://www.cfscentral.com/
Kitei Breaks Alter Story - doing her due diligence Mindy Kitei at CFS Central not only got a hold of the paper before publication but also interview Dr. Alter, Dr. Komaroff and others.

The surprise of the paper was what Dr. Alter didn't find - XMRV! Even more surprising was the fact that his finding of a melange of closely related viruses actually made sense in some ways. One reason that none of the six or so CFS studies have been able to find 'XMRV' may be that the type of XMRV they looked for was different. This doesn't explain, though, how the WPI found 'the same type' of XMRV in 67% of its original cohort since that cohort was made up of patients across the US.

Kitei, however, reported that Dr. Alter believes his findings confirm the original XMRV findings stating "Viruses tend not to be homogenous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” Dr. Alter should certainly know - his work on hepatitis viruses that lead to the discovery of two new viruses garnered him the 'Nobel Prize' of Medicine - the Lasker Award. Dr. Alter found no less than four different types of heretofore undiscovered mLV's in CFS. They were named, appropriately, "CFS Type I", "CFS Type II", etc.

Mutating over time like any good virus should - Dr. Alter was also able to find the pathogens in blood that was fifteen years old and then retest those individuals today. He found the virus present in 7/8 of them in mutated form - which is exactly what one would expect from a virus over tiem.

According to Kitei, Dr. Alter felt the delay in releasing the study only strengthened the study, stating “There were no changes in the conclusions, but we added data that made the conclusions stronger,” he explained. “For one thing, we did some further work to feel confidant that there was no contamination…. We had hundreds of negative controls, and every assay had negative controls. And then we used an assay from mouse mitochondrial DNA and found that there was no evidence of mouse contamination. We had variation in the viruses we were finding. If there was a contaminant, you’d find one species, not several.”

Now Dr. Alter will give XMRV its next big test - he will search for it in a wide variety of disorders. The danger is that it is widespread in chronic diseases, which, would negate its importance unless it really is some sort of superbug. Hopefully, it will be found clustered in a series of 'NEID's' such as FM, GWS, MCS, IBS. Now we await the results of the briefing. For more on Mindy's breaking story
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
hi, last para of paper prior to methods details:

Finally, the finding of MLV-related virus gag gene sequences
in nearly 7% of healthy volunteer blood donors in our study and
of XMRV in 3.7% of healthy controls in the study of Lombardi
et al. (3) raises additional issues. The possibility that these agents
might be blood-transmitted and pathogenic in blood recipients
warrants extensive research investigations of appropriately linked
donor–recipient cohorts.
 

Sunshine

Senior Member
Messages
208
Location
UK
Nice find Alex3619.

''Appropriately linked donor–recipient cohorts.''

Time for this to happen ASAP.

When it comes out positive, we'll have another HIV-like crisis on our hands.

So much easier to tell people to do CBT and exercise and blame them though isn't it?

Not that anyone would be silly enough to do that.........
 

Quilp

Senior Member
Messages
252
Oh there should be trials alright; I believe the Hague will do nicely.

Kind regards, Mark
 
Messages
80
Location
Amersfoort, Netherlands
Too bad that the US still doesn't cooperate with the International Court of Justice in The Hague ;-) I would like to nominate a few people for a vist to the Scheveningen Jail :)

But that's not the kind of trials I was talking about. Can't believe it that the CEO's of big Pharmaceuticals are already downplying demands for clinical trials. They should be jumping for it! God knows we've waited long enough....