NIH/FDA XMRV Paper by Dr. Alter Out!

[RustyJ]

yep CFS 1,2 and 3.....I think after 25 years we have finally nailed it!

Am I the only one who thinks the FDA have made a number of digs at the CDC, which possibly infers some rankling over interference. Just to highlight a few of the blatant incidents:

In the paper
naming CFS1, CFS2 etc,

In the teleconference
several time the moderator appeared to deliberately embarrass the CDC's Dr Monroe

 

[Andrew]

Just in case this was not posted elsewhere

http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1&hp

http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html?hpid=topnews

http://online.wsj.com/article/SB100...7744076968322.html?mod=WSJ_hpp_LEFTTopStories

:victory::victory::victory::victory::victory:

 

[John Leslie]

That's my feeling too, although we shouldn't lose sight of the fact that the change in nomenclature is (presumably) a more accurate description. We do make forward progress with the understanding of what's going on with this paper.

Alter admitted (somewhere) that the WPI are much more advanced in their work on other issues like antibodies; he was looking at this very specific question and seems to have drilled down far enough to get to the bottom of precisely what MLVs are present. Going into more detail on one particular question, whereas the Science paper covers broader ground.

But politically, it does seem that this exercise is very convenient, because that level of detail goes some way to explaining - even excusing - the negative studies. I always thought that there would need to be progress on answering that question before this could be published. They couldn't publish it saying they had found XMRV (which their first pass of results would have found I would imagine) so they had to dig deeper. Unfortunately, that makes it possible to misrepresent that the WPI didn't go into enough detail here, whereas in fact they covered a lot more ground in breadth rather than depth.

Reality is that this paper is a compromise solution, allowing everyone to present a story which defends their position. The negative studies can say it's not their fault they didn't find it because it wasn't quite XMRV. The Lombardi study is confirmed. Knowledge is advanced. And everybody's happy.

Truth is, though, that what has happened here is simple disrespect of the WPI slowing down research. Because they were small, independent, from Reno, behaving like mavericks...all these things played into the prejudices of the more 'establishment' scientists who couldn't believe that a group of motivated researchers could achieve what the authorities had failed to achieve. They also had a variety of preconceived beliefs about CFS - and that includes 'good' CFS researchers who thought a single cause was unlikely because CFS isn't really 'one condition'. So they didn't believe it - despite the ringing endorsements from the likes of Coffin, and the rigorous processes required by Science magazine. And since they didn't believe it, they didn't try hard enough to figure out what was really going on. When they didn't find it by the first simple tests, they jumped straight to theories of contamination, geographical distribution, and even fraud by the WPI. Their arrogance nearly buried us again - and maybe it would have done without Dr Alter.

I am finished for awhile. The work of the WPI is confirmed (Alter said as much in the press conference) and the press doesn't or won't get it right. I am so disappointed.

 

[Recovery Soon]

I am finished for awhile. The work of the WPI is confirmed (Alter said as much in the press conference) and the press doesn't or won't get it right. I am so disappointed.

I think the scientific community gets it loud and clear. Don't get discouraged. This is a great day.

 

[urbantravels]

Don't forget that the scientific community was *already* charging ahead with multiple new studies before today. They weren't waiting for these results to see whether this subject was worth their attention.

We'll be hearing so much more very soon - Mikovits on XMRV in the UK, Ila Singh's work, the NIH study of the Lyndonville patients. The NIH workshop is going to be chock full of interesting discussions - arguments, too. And that's just two weeks away!

The press will get it eventually, because the interest is out there. And the scientific community is NOT taking their cues from the popular press.

 

[alex3619]

Hi sunshine, just to be clear, this was asleeps link, I just emphasised that it is the full paper. Asleep deserves the credit. Bye, Alex

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.........

 

[Snow Leopard]

I am a bit shocked or disappointed that they didn't explicitly find "XMRV". This paper doesn't settle the debate unfortunately.

Also note the new wording on the VIPDx site regarding the serology test.

 

[alex3619]

limerick with apologies to tradition

Hi,

I have been thinking that nursery rhymes have dark edges and were used to spread propaganda - you can hardly complain about a kids rhyme, can you? With that in mind, here is a recognisable limerick, with some hard-edged political commentary added:

The other day up in our lair,
We sought a germ, it wasn't there,
It wasn't there again today,
Sweet Reeves why wont it go away?

Bye
Alex

I absolutely agree George. It's almost as if some shocking secret has been uncovered, something that nobody believed possible, an 'Oh My GOD' moment, and then disbelief, more disbelief, a shake of the head, a pinch of the cheeks, a slap across the face.....no it's still there the elephant in the room and it's sat on Bill Reeves.

 

[Sean]

It looks to me like we are watching a seasoned campaigner at work. This isn't a matter of staking everything on a single battle. This is seige warfare: building earthworks, digging trenches, bringing in sappers. Once the defenders can see the outcome looming you can expect them to abandon the position.

and:

Harvey Alter has skillfully undermined the CDC position without becoming an official adversary. He has provided an unambiguous alternative to using artificial positive controls with 'spiked' samples. ("Just use the healthy blood donors with the infection I found.") This also undercuts the "no evidence the virus is in the blood supply" position. If they take another out, his admission that infection might possibly be the result of an immune defect, they will have to revise another pillar in their structure concerning immunology. The house of cards can't survive such changes.

Agree. He knows what he is doing.

 

[LJS]

McClure's Responce

"Let's be clear: This is another virus. They did not confirm [Mikovits's] results," says retrovirologist Myra McClure of ICL, a co-author of one of the four negative studies.

http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

Oh wow, this is going to get interesting.

 

[alex3619]

Hi Mark,

Or to put it another way: if it quacks like a duck, it looks like a duck, and it acts like a duck it probably is a duck. Just beware of caveats: it is only possible it is a duck and maybe we just want to think its a duck - some people will still want to push that line. Bye, Alex

Nice one Rusty, what I'm looking for is soundbites to respond to disinformation, and when they say "doesn't prove causality" we can say "correct - but by Occam's Razor..."

 

[alex3619]

Hi anciedaze

I came to this conclusion some time ago - it is information warfare. The lines are drawn, and now it comes down to not just pitch battles but a slow attrition of the position of the enemy until they are forced to give in or reach a compromise. Beware of compromises, the CDC may want to give us this battle and still claim CFS as their own.

Bye, Alex

Don't get too upset with the definition. If you go through the bibliography, you will notice that the entire body of Reeves' work on the empirical definition just disappeared. Remember also that the CCC is the Canadian Consensus Criteria, and Lo and Alter deliberately used the word consensus.

It looks to me like we are watching a seasoned campaigner at work. This isn't a matter of staking everything on a single battle. This is seige warfare: building earthworks, digging trenches, bringing in sappers. Once the defenders can see the outcome looming you can expect them to abandon the position.

 

[Sean]

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.

Yes, it was always unrealistic to think that would happen.

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

Agree. We have waited a long, long time for this day. Try to find least a little pleasure in what is possibly the most important day so far in the history of this disorder, and don't spoil it for the rest of us. Just for one day. Please?

 

[Sean]

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.

Doggy Dude, it has been less than 24 hours since the paper was published. It will take a while for the media (and everybody else, including us) to grapple with the subtleties and implications of this very complicated and profound development.

 

[alex3619]

Hi

It is looking more and more that CFS is one disease with mutiple causes - different or variant MLVs. It is even possible that most of the patients diagnosed with even dodgy CFS (Oxford, Empiric) just have less virulent virus versions. Don't forget that the evidence for efficacy of CBT/GET are that they make patients worse. Even under dodgy definitions, if you count drop outs as failures (sometimes over half the patients), most of these studies have a failure rate in patients approaching 100%. Not a ringing endorsement of CBT/GET, and it just might have something to do with exercise causing retrovirus replication and a worsening of infection. Just maybe....

Bye
Alex

 

[Rrrr]

Very well spotted RustyJ.

It seems from one of the articles I've just read, in which the Editor of PNAS (Randy Shekman?) was interviewed about the publication delay, that one of the PNAS reviewers had asked Harvey Alter to try to prove that the retrovirus was integrated into the human DNA, if I understood correctly.

It seems Alter decided that it would be unfair (to us!) to delay the paper any further this time around, but that the Editor hopes that will be the focus of Alter's next study (BEFORE he starts clinical retroviral studies).

Would proving viral integration prove causation?

McClure meanwhile is off on her own planet once again - 'Well they didn't actually find XMRV' etc etc. Denigration is now her main approach, rather than furthering the science or being curious to find genuine answers that might actually help someone.

this seems like the key question. why would the PNAS editor ask for this otherwise?

 

[alex3619]

Hi

Proving integration cannot prove causation. It can only prove retroviral infection to near 100% certainty, with zero chance of contamination issues. If, however, integration is in critical locations, then it could prove physiological interference by the virus and we would be one step close to proving cancer links and other issues. Bye, Alex

 

[Doogle]

It seems incredibly improbable to me that finding the virus in about 85% of patients and in only 7% of healthy controls at this stage that the virus wouldn't be pathogenic in the illness. I don't believe they had that strong a linkage for HIV when they declared that they had found the cause of AIDS.

 

[Cort]

There may have been different MLV variants in the WPI samples, but I expect that the WPI didn't have the funds to genetically sequence the entire genome of each virus they detected... They probably just sequenced one or two... I don't know if this is outlined in the Science paper. Obviously the FDA and NIH have almost unlimited funds, so they could sequence each and every virus which they isolated, and so they could detect the variants. But I suppose this depends on the specificity of the tests which the WPI were using.

As I remember the WPI sequenced the full genome of the virus twice. I think the Lo/Alter group amplified the gag sequence of 21 samples. So the WPI did more complete work but on fewer samples. That is my recollection.

 

[Cort]

Hi, Judy identifies the problem with the failed studies was they were using primers to find cloned xmrv, not that in patients, and it was too specific given the range of virus present in real patients. Bye, Alex

I think she must be right and the Alter study goes along way to proving the existence of retroviruses in ME/CFS but the initial WPI paper used gag sequences from XMRV from prostate cancer tissues - just as everyone else did. I looked at almost all the papers, positive and negative, and they all looked for the same gag sequences. Basically, my take is that its not their fault - there was no indication in the original paper that that was necessary.

Somewhere along the line the WPI became focused on culturing; on taking cells from patients and culturing them. THey did that in the original paper but that was not the central finding - the central finding was that they found gag (and env) sequences synonymous iwth MLVs. THey then did the phylogenetic analysis and discovered they had found XMRV.

For whatever reason when Alter and Lo looked for those gag sequences they finally found them where others had failed. I' don't think anybody knows why yet.