Mark is absolutely right and its exactly the same thing has been nagging at the back of my mind since the Alter/Lo publication this week. The crucial point is that Dr Alter specifically said (according to the Dutch journalists) that he had found "XMRV & MLV's" at his Zagreb presentation (?in May/June).
I have been looking in all the obvious places, but was only able to relocate the original Dutch journalists article from June 22nd 2010 today.
Here it is and the quote from Dr Alter is quite specific and very clear: XMRV and related MLVs are in the donor supply ..
http://www.mmdnewswire.com/xmrv-9040.html
"The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
So either Dr Alter was:
1) referring to the WPIs finding with this XMRV comment, or
2) he has been misquoted (does anyone have those original slides from his Zagreb lecture please? - these were confirmed as being genuine by a spokeswoman for either the NIH or the FDA at the time), or
3.) he is not presenting the full extent of the facts in his PNAS article (I did have another much more tactful phrase for this, but it has slipped my mind at time of writing!)
4.) He says specifically that XMRV is also in the 'donor supply' ie implying the blood bank (not just MLV,s)
5.) I have misunderstood entirely and this has already been covered in the forum discussions.
The title I have after my forum name (above) is XMRV: LAgent du Jour. I have this because it is a direct quote from one of Dr Alters slides/his speech at the June Zagreb conference and it really appealed to me at the time. If he had said it differently, my title would have been "MLV"!
WHAT is going on here?
And does anyone have those slides please?
Apologies if this has already been resolved.
Comments on the Agent Du Jour -XMRV
•The data in the Lombardi, et al Science manuscript are
extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV
sequences, but they have infected prostate cell lines and
recovered gamma retrovirus particles and have transmitted
XMRV to rhesus macaques by the IV route and demonstrated
infectivity
•Although blood transmission to humans has not been
proved, it is probable
•The association with CFS is very strong, but causality not
proved
•XMRV and related MLVs are in the donor supply with an early
prevalence estimate of 3%‐7%.
•We (FDA & NIH) have independently confirmed the Lombardi
group findings
---
he clearly stated that FDA/NIH confirmed Lombardi and that XMRV and MLVs are in the donor blood supply with an estimated prevalence of 3-7%. As i understand this; Alter, at that time, did not make a distinction between the viruses he found and these that WPI found! My guess is that, since the same facts can be presented in many different ways, he chose/had to choose a way to put his findings into words that would be "politically correct" and not embarrass another government agency CDC.
Request not accepted. It was a catchy title and it reflected the very surprising finding of more viruses. Don't read too much into it.
This lends weight to the argument that the real difference between the Alter MLVs and XMRV is one of semantics.
What it is important to get out of all of this is that the paper brought into question the "xenotropic" component of the nomenclature. They are all MuLVs, and from what I understood, they are not even necessarily different strains - more research is needed there because they were only partially sequenced. Variants is, for now, the best description, strain is not, and it is not correct to call them different viruses. Even within a single person and over time, retroviruses mutate, and the normal level of mutation is consistent with the level of variation they have found. During that process, the virus could certainly recombine, within a single host, to create a variant that is xenotropic. What the Alter paper showed is that the xenotropic variant is not the whole picture.
Cort, I hope you haven't missed the point I made in: http://www.forums.aboutmecfs.org/sh...-Paper-Arrives&p=116759&viewfull=1#post116759 .
Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly. Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate)
The primer sets we used for studying CDC samples were the same ones published in our paper. The primer sets should amplify both XMRV and MLV-related virus gene sequences we identified in our PNAS study.
Cort, I understand you have written the article from your perspective. I am not really sure of the objective. Is it to educate, inform or is it to sell the article (get it out there). You say it was a catchy title? Do you need a catchy title. Wouldn't an accurate title do the job? You could have written "One virus or four... for a more balanced presentation and to truly illustrate the dilemma.
Again you link the title to the finding of more viruses, but isn't that the bone of contention: Are there more viruses or is it the same virus. Given that the argument is increasingly being seen as one of semantics (I refer to the Alter slides) and in the wider context of a decades-long public relations battle over the ashes of lives of CFSers, shouldn't we be extra vigilant about semantics.
We agonise long and hard over the use of Chronic Fatigue instead of Chronic Fatigue Syndrome, ME instead of CFS, etc the list is long. We are ever mindful of attempts to divide and conquer. Since the media have been thoroughly confused over the 'Is it XMRV or not?' conundrum, I see this as a critical divide and conquer issue. For you to say by way of explanation it was 'a catchy title' is not justification for its use.
Maybe this lends some more support to the interpretation of Dr. Lo's statement that they didn't find MLV's in the CDC population either. That would actually fit with Dr. Monroe's statement that they could find MLV's in some prostate cancer patients but not in their CDC 'CFS' patients. Otherwise I would be surprised that Dr. Alter would say something like that given the question that was raised about primers.Dr. Alter suggested that the different retroviruses the WPI and his group picked up may be due to geographic differences in prevalence and patient selection. "Dr. Alter said the most likely reason for the discrepancy in results is patient selection. Diagnosis of CFS is based on a symptom complex, not a specific disease marker. All patients in the NIH-FDA study met the accepted diagnostic criteria for the syndrome, and most blood samples were from the patient population of a single coauthor, who is a CFS expert, he said. "There may be a geographic difference," Dr. Alter told Medscape Medical News. "In the Northeast, CFS may be due to MLV, and in the West, it may be due to XMRV." which is an interesting idea but doesn't seem likely, at least from this laymen's perspective, to hold.
It's true that the WPI patients came from doctors across the country, none of which to my knowledge, was in the Northeast. The WPI, however, has found XMRV variants in those patients dating back to the original paper. While those variants were not in the original paper they were used as supporting material for the Science editors who wanted confirmation that the WPI was not looking at a contaminant. The bottom line is that the WPI has apparently known of XMRV variants from the beginning.
Based on her testing Dr. Mikovits believes two of them are strains and two are actually very close but different viruses.
I think that would be an amazing finding - to go from 85% with MLV's to none - that would REALLY say something.
For those of you who remember the alka-seltzer commercials, I think we should start awarding T-shirts which say, "I can't believe I read the whole blog" for anyone who actually got through the 290 or so comments.
The obvious problem with this illness is that we don't know what we have and how to treat it. Some of us have low NK activity and immune dysfunction, some low blood volume and autonomic dysfunction, some have significant neurological issues, some endocrine dysfunction and other sleep dyfunction. Most of us have a combination of those factors and have been placed under the all knowing CFS monicker to define our illness. That being said, EVERYONE on this site has a physiological based illness.
In my view, Sunshine said it best, "The only way to stop irritation on both sides, is for there to be a diagnostic test for CFS, or for a neuro immune disease linked to XMRV/MULV."
Until then, many of you may want to stop shooting the messenger. So far in reading the comments, Cort has been called ignorant, biased, sexist, told he doesn't know what he's talking about, that he has an agenda and that he may have an independence issue/conflict of interest as a paid "consultant". This is America so everyone gets an opinion but all the article really said in summary was that after three negative studies, the Alter study confirmed the findings of WPI and in a statistically significant result, showed evidence of a family of retrovirus in the samples tested which were close cousins of XMRV. I recognize that many of you are angry at the CDC, the government and certain physicians and have sensitivities toward various groups that you may have relationships with but the displacement on Cort is completely unwarranted.
We've got highly respected scientists dealing with these studies who can't replicate findings or agree on the intepretation of the results. Whether Cort's interpetation of complex science is perfect is completely irrelevant to the big picture. The way I see it, Cort's only agenda is to get well himself, help and meet others along the way of his journey and create a voice for people with our illness (or reasonably similar disease pattern) to be heard and share information between. I think it's fine that we have some highly educated individuals with medical and scientific training on the board who can provide insight into the research but at the end of the day, it's all just a dog and pony show until science figures this out.
There's a good video here on youtube explaining the Alter/Lo paper for people who may be confused if XMRV is a 'different' virus to MULV's, not possible as it is an MULV.
http://www.youtube.com/watch?v=9ZEwQUg7o6I
MUCH ABOUT THIS IS EXTRAORDINARY!"The data of our paper, that Harvey Alter and Shyh-Ching Lo have now confirmed, suggests that there are actually a family of human gammaretroviruses that are MLV-related viruses"
"...those numbers now approach 85 and 90%, which is what we had been saying publicly, after we went back and decoded the samples and found that sometimes PCR-negative samples looking at specific XMRV were actually positive looking at a family of viruses and actually were P-variants"
This was a very good post by goldiland and doesn't misrepresent anything.Given that the moderator had clearly said that this discussion was to stop, I am astounded to find this comment still here several hours later. Clearly it is only people who object to Cort's reporting methods and have tried to articulate why who are supposed to shut up. Everyone else can go on misrepresenting what we have said as much as they like.
I would wish that the moderators here could understand the difference between moderating and participating in a swarming.
This was a very good post by goldiland and doesn't misrepresent anything.
Anyone reviewing the thread can see that both Cort and v99 continued to argue this issue after my comments, which is up to Cort of course, I've made my opinion clear. Given that the argument had resumed it's understandable that goldiland made this post.
I called for everyone to stop these arguments and take them elsewhere, but clearly Cort wanted to continue and some aspects of the discussion were a little more fruitful, so people continued to post about the side-issue of Cort and his journalism. I have not reviewed the thread to see what vague and unreferenced insults and allegations continued after my comments but I will reference any I find and point them out to the moderation team later.
You may be astounded that goldiland's post has been allowed to stay here awol, but I doubt it. But prepare to be truly dumbfounded and amazed - I haven't even been logged on during the middle of the night: I went to sleep!!! Well, for part of the night, anyway. Perhaps you know which other moderators are on duty, I haven't a clue on that one.
And if by a swarming you mean everybody ganging up on you and pleading with you to stop posting rubbish, then yes I gladly join that swarm, because it is rubbish in the form of a series of unjustified, unexplained, unjustifiable attacks on Cort's integrity, reporting, and whatever else, prompted by spurious stupidity such as the "viruses" non-issue, and the only real criticism I have of him right is that he puts up with it.
noone ever said there was sexism involved in calling them viruses. Once again, instead of being a good objective moderator, you gleefully participate in the manipulation of what people here have said. You would be far more credible if you were not so blatantly malicious Mark.
Second while it is true that all of these scientists are calling them "viruses" in plural, the subtlety that you are ignoring is that ALL viruses are as complex as this. We still call Hep C the Hep C virus even though it is at least as variable. Same with HIV. This list goes on and on. This is why it is misleading and wrong to refer to 4 different viruses in the title. If Cort insists on this, then from now on, whenever he talks about ANY virus, he will have to start saying viruses in plural "oh, I caught the H5N1 viruses" so and so is suffering from the Ebola viruses, etc. etc.
If Cort's "sexism" is a subtle mechanism causing him to "attack the WPI/Dr Mikovits", and examples of that "attacking" are similar to this one about the 4 viruses - and the thing is, they always are like this - then my representation of your muddled reasoning makes at least as much sense as the reasoning itself.
Mark, since you have so blatantly misinterpreted what I said, who are you to say it is not a misrepresentation?
Absolutely noone called Cort a sexist.
Yes, I know you did. It's a ridiculous comment. Apart from the fact that Cort never has "attacked" Dr Mikovits, and that's just your hyperbolic interpretation of comments he has made, I don't see why you should be allowed to say "this reminds me of sexism" (as if anybody was interested in that reflection) and then go on to say "oh I'm not saying you're sexist, that's just what it reminds me of..." and also expect that people won't defend Cort from that allegation.I said that a particular behaviour pattern in a particular situation (attacking Mikovits PR skills and
using this to undermine her brilliant science), to me, was reminiscent of sexism.
And of course anybody who does defend Cort is obviously a man (how do you know all their genders then?) and presumably the whole swarm is a swarm of sexists.Subsequently, a whole swarm of men chose to jump on me for this comment. Wow.
Even though Wessely and White have been cited as examples. And again in any case there's the casual incorrect premise: that Dr Mikovits science is being "discredited because of social skills" although as so often it's not clear who exactly you're saying, or implying, is doing this.Yet noone provided an example of a man whose brilliant science was similarly discredited because of his social skills. I am still waiting there.
Well. It's useful you're here to be completely unbiased. Until now I had assumed there was no such thing, much though some people try to be unbiased.I also said that while I do, for the moment, believe Cort to be biased, he can prove otherwise by doing one of two things:
No it is not. his "pattern, universally", again you are just getting completely carried away.Either extend the same benefit of the doubt to Mikovits as he extends to the CAA (ie. work from the assumption that he does not know what is going on behind the scenes) OR, provide a detailed critical analysis of what the CAA does, how they do it and why. Without doing this, his pattern is universally, undermine Mikovits and cast doubt whenever possible, but vigorously defend, even without basis, anything the CAA says or does.
I would if his behaviour were as you characterise it.Given that the WPI and the CAA are in loose competition for the private contributions of patients and for research grants, and that for a while Mikovits' science was in serious danger of being repressed, this behaviour on Cort's part is not without consequence. I take this issue very seriously.
So should you.
Great idea! Can you recommend any good books on that?So, learn to read.
Perhaps in the latter case you are just suggesting that someone may be a sexist because their pattern of behaviour looks to you like a sexist pattern. And therefore that's different from saying they are one.Learn the difference between calling someone a sexist, and pointing out that a certain behaviour follows a known sexist pattern.
Believe me, I am holding back my vitriol.Lern to seen when the tone of those who are attacking people you happen to disagree with is blatantly hostile and uncalled for, while the tone of the one you do not agree with has remained calm and rational. Learn to hold back your own vitriol.