Mikovits interview states the FDA will confirm WPI findings in a Sept publication

[V99]

I don't believe the CDC did any retesting.

 

[anciendaze]

Yes, maybe she did find something but no one was able to reproduce what she did find using her techniques (or others). All they had to do was find the sequences - and a large number of people, including herself, weren't able to do that. Its too bad she didn't have more money - she clearly needed it - but she couldn't get grants except for the CAA - which, of course, didn't have much money. Maybe if she'd had more money things would have been different...but my guess is not.

DeFreitas was unable to distinguish CFS patients from controls at the CDC using her test and that the following groups were also unable to distinguish CFS patients from control using DeFreitas work or were unable to find HTLV in CFS patients.

• A lab licensed by Wistar (her funder) to produce a test
• A lab in Texas that had been reporting near 100% accuracy until blinded tests were done at the CAA - their findings were described as resembling throwing darts a board
• Dr. DeFreitas herself was unable to do that using patients of her own choosing from Dr. Bell's studies at the CAA (Hillary Johnson chose not to report this in Osler's Web. Dr. DeFreitas was given a final chance to show that she was right. Based on her findings about half the CFS patients and half the healthy controls had her virus.)
• The Gow Group
• A Japanese Group
• the CDC twice
• The National CFIDS Association about 10 years ago.
• The WPI reported XMRV is not HTLV-like and that they found no evidence of HTLV viruses or viral sequences in their extensive pathogen arrays on CFS patients.

Based on that I really don't think an HTLV-like virus is a possibility. Its a tough field! Her viral findings in multiple sclerosis didn't pan out either.

I think there is some misunderstanding here. DeFreitas did not claim to have found HTLV-1 or 2. She explicitly tested for them, found they were not present, and said so. She was combing through viral fragments with primitive technology. There has been repeated falsification of claims never made in this field. What had been missing until recently was a desire to get to the bottom.

For another thing, Hillary Johnson did mention problems DeFreitas had with distinguishing patients and controls for CAA in passing, though she did not emphasize them. Confusion about a possible communicable disease undermined many studies, because controls were often infected, but asymptomatic. (This derailed Grufferman's research on the NC Symphony.) Those proposing these tests had not carefully separated controls and subjects, (indeed, they did not have reliable diagnostic criteria,) so the validity of the double-blind tests was subject to question from the beginning.

DeFreitas was forced into double-blind testing while she was still in the discovery phase. Robert Gallo took about two years to reach that point with HIV, with far greater resources. Forcing DeFreitas to choose subjects pushed her out of her area of competence, and she knew it. She never finished the last double-blind test simply because her health failed. I'm afraid Walter Gunn, who was right about many things, was simply not qualified to advise the CAA on retroviral research. He had an understandable desire to justify himself to his former colleagues, but that was a personal issue.

Yes, there was confusion. This is standard early in research. Enrico Fermi won a Nobel Prize for creating transuranium elements, when he had inadvertently found nuclear fission instead.

DeFreitas had at least one virus she could culture. She had TEM pictures which said retrovirus. I'm told there were pictures of virions inside mitochondria. HTLV does not do this, MLV does. If she was able to culture any retrovirus from patient samples, that was a significant finding. Even if her assay was picking up fragments from different viruses, retroviral sequences should not have been there. Seeing a complete virion inside mitochondria is a strong hint in the direction of XMRV. Why didn't anyone follow up?

Her actions in announcing a discovery prematurely have been repeatedly criticized. She was forced into this by Hillary Koprowski, because Wistar needed to attract money for research. Koprowski was forced out because of funding. They were forced into taking risks by the complete lack of official support for their research. Others were ready to pounce on missteps, while hiding their own. (Did the CDC lab have a problem with contamination during this time?)

As for what caused other confusion, check for recent research on "acutely transforming" virus in laboratory cell lines. Viewed with hindsight this was an important discovery, even if it came by accident. Other Nobel prizes have been awarded for discoveries made by accident.

By the way, has anyone tested those 'MS patients' she tested for XMRV?

 

[Cort]

Sure she was 'pushed' too fast but she did make the announcement that she had found an HTLV-like sequences in CFS. Alot of people looked for those sequences and nobody was able to find them. Yes, Gunn was not qualified but the CAA put together a scientific panel specifically to advise them on these issues. I looked through Hillary's book very carefully when I got the info on the last study. I never found it. DeFreitas original study was blinded as I remember. It was a published study...I know she did grow things but I also read that its not that hard to be able to grow things...I don't know if that's true or not...

I don't imagine after the testing that's been done by the WPI that there's any chance that an HTLV-like virus is present in CFS. It just didn't work out.

People have been scouring MS tissues for pathogens for years; there are candidates but there's no consensus in the field. I'll bet they'll be looking for XMRV.

 

[Sunshine]

I'm told there were pictures of virions inside mitochondria.

Which would be an incredibly important finding in a disease ME/CFS that causes total exhaustion of brain and body and thus very highly significant. Why was this ignored by the CDC?

HTLV does not do this, MLV does

Correct. There is no evidence of HTLV virons inside mitochondria. MLV class virus are the only viruses shown to infect mitochondria and alter CREB gene function, and XMRV is an MLV class virus....which does make one wonder about XMRV in ME/CFS. This will be the next bombshell in my opinion. The reason for cellular exhaustion in ME/CFS proven once and for all. XMRV fits this perfectly.

They were forced into taking risks by the complete lack of official support for their research.

Correct, Dr Cheney stated the CDC said they 'couldn't afford the plane ticket' to fly to the lab. A very bizarre thing to say when DeFreitas was possibly sitting on the cause of ME/CFS and very very suspicious coming from a health organisation that stole $10 million from the American tax payer's funding into CFS and put it into 'other conditions' before being exposed. Why would the CDC need to divert funding for CFS, if only other than to stop research? This act, coupled with DeFreitas having evidence of a new retrovirus under a microscope in CFS patients is terribly wrong.

DeFreitas did not claim to have found HTLV-1 or 2. She explicitly tested for them, found they were not present, and said so.

Correct. HTLV-1 & 2 are not what DeFreitas found, she found a new retrovirus in CFS (CAV), captured an image of it, and even published research on it as evidence hoping to garner more interest and funding. She also had her paper on CAV inexplicably rejected by a medical journal no less than three times, which as it was perfectly acceptable points to a collusion of the journal and political decision making. A La 'delayed' publication of the Alter/Lo paper, again for political reasons (censorship of the truth).

Post XMRV, Dr Klimas said, someone's going to 'go down' for this, and right she is. Globally, there are too many people dead and severely disabled from CFS, and too many highly intellectual people who have spent years collecting, investigating, then cataloguing the whole CFS tragedy for everyone to escape on a boat off to Hawai and an early start to daily 'morning golf'. Most will, but all clues lead back to the CDC and unfortunately for them decisions that were indefensible at the time were indeed made by high ranking officials.

I'l leave you with an interesting quote worth noting from ABC News nightline TV broadcast on CFS in America well over a decade ago

Dr Philip Lee - Assistant Secretary of Health

''I would say it would be a retrovirus, or a virus I would think so''

Why would the CDC ignore the US Assistant Secretary of Health and an electron microscope that finds CAV in CFS patients, and instead employ Stephen Straus to publically state that CFS is form of psychoneurosis and that the documented outbreaks were 'mass hysteria'. This odd theory on CFS then later evolved into Reeves's 'childhood trauma' (Copied by Wessely in the UK) and resistance to engage in treatment protocols and phobia of exercise. All utterly unscientific, especially when talking about a disease with, by now, 4,000 published papers on the biological basis of CFS.

The whole CAV/XMRV situation is so bad for the CDC when it comes to trying to dream up a defence case on why they have bumped off so many Americans with CFS and also others globally by their advice being used by other governments. No wonder the old CDC CFS website magically was replaced with a toned down version of how serious CFS is, and the CDC's 0% XMRV study was produced without even using a known positive XMRV sample. Yet, despite this their paper was published first time, unlike DeFreitas's that got rejected over and over again. :worried:

Scientific/medical historians will look back at this time in history (as well as back to DeFreitas's era) and think...did the CDC really do that, I mean really?

Yes.

 

[dannybex]

Rich reports that the FDA-NIH study may be published 'next week', in his report re the WPI Opening Day in this thread:

http://www.forums.aboutmecfs.org/sh...on-the-WPI-community-open-house.-Aug.-21-2010

"Everyone is anticipating the publication of the NIH-FDA study, which is supposed to happen next week and is expected to confirm the WPI finding of XMRV in CFS. This is expected to be a major boost for the WPI, and hopefully will help them in getting grant support for their work, which will be very important for the future of the Institute."

 

[Sunshine]

Thanks Dannybex.

Fingers crossed!

 

[Rivotril]

Rich reports that the FDA-NIH study may be published 'next week', in his report re the WPI Opening Day in this thread:

http://www.forums.aboutmecfs.org/sh...on-the-WPI-community-open-house.-Aug.-21-2010

"Everyone is anticipating the publication of the NIH-FDA study, which is supposed to happen next week and is expected to confirm the WPI finding of XMRV in CFS. This is expected to be a major boost for the WPI, and hopefully will help them in getting grant support for their work, which will be very important for the future of the Institute."

thnx, for this. But what is meant by "next week"? today is sunday (WPI thing was yesterday), and next week starts tomorrow so can it still be tuesday? or do I have to interpret this as "not the upcoming week but the next one" :Retro smile:

 

[urbantravels]

Next week as of Saturday (the day of the opening), which was last week.

 

[John Leslie]

According to my Washington contact, the Lo/Alter paper will be released tomorrow and published on Tuesday. The paper will confirm that XMRV and its variants (human MLV-related viruses) are associated with CFS and are also present in the blood of healthy controls. The WPI "will be completely" vindicated (including the variants disclosed by WPI in support of the Science paper) and the negative studies are likely the result of the non-use of the Lombardi primer sets or or other equally sensitive tests. The study apparently blows away the "contamination" argument, finds the retroviruses in over 85% of the CFS patients, and almost 7% of the controls. Maybe someone can get an advance copy on Monday or early Tuesday.

 

[urbantravels]

WOW!!!!!

For PNAS-stalkers, if they follow their usual procedure, press embargo lifts 3 PM Eastern, noon here in Pacific time.

WOW!!!

I wonder what life will be like outside the "wastebasket"?

 

[anciendaze]

... I looked through Hillary's book very carefully when I got the info on the last study. I never found it...

I've had that experience with other things. The sheer mass of detail, and the narative presentation of the controversy, makes it difficult. I'll try again, because I know I read it somewhere. (BTW: Can anyone give me a reference to the chapter and verse where she talked about Stephen Straus' meeting with potential investors in possible Wistar patents?)

DeFreitas original study was blinded as I remember. It was a published study...I know she did grow things but I also read that its not that hard to be able to grow things...I don't know if that's true or not...

One important thing about that work was that DeFreitas' husband went to some lengths to supply negative controls, and make sure the negative control samples would not come from people who might meet diagnostic criteria for the illness. He even got umbilical cord blood, which should be negative for everything, barring vertical transmission. The reason for this was that a high percentage of controls had tested positive earlier. This level of care was not taken by people who did not believe there was an infectious disease. The discovery there were strong results with samples from actual patients, and lesser correlation with those closely associated with them, by a bench scientist who only saw samples, is a striking indication she was onto something.

Culturing virus can be very hard. I seem to recall hepatitis-C has caused researchers problems. DeFreitas' assistants had put in a lot of time and effort on this. When the funding ran out, this experience was lost.

Regardless of how hard it is to culture something a retrovirus has to come from somewhere. You try to rule out laboratory contamination, as DeFreitas worked hard to do, and the only other possibility is that it came from patients. This doesn't mean the cultured virus is exactly like the one in patients. That's why I talked about an "acutely transforming" virus-infected cell line above, which has since turned up in connection with XMRV.

I don't imagine after the testing that's been done by the WPI that there's any chance that an HTLV-like virus is present in CFS. It just didn't work out..

I don't expect to find an HTLV virus in this either.

Remember she was working with fragments. This was exactly how HIV was tracked down. At the time getting an entire viral genome was a massive undertaking, which takes us back to funding.

Her approach was exceptionally demanding. She adjusted the sensitivity of her test so that it fell just between the points where it matched everything, or matched nothing. It was balanced on a razor edge. The main tests which 'refuted' her work either got positives everywhere, or showed nothing. This was research work, not a clinical test. Nobody else ever demonstrated the required combination of sensitivity and specificity. (It is even possible that after her accident, and brain trauma, DeFreitas was no longer able to meet her own high standards. This is a personal tragedy, not part of the science.)

The idea that it "just didn't work out" tends to stylize science as a kind of murder mystery which either leads to a conviction or fails completely. Each piece of work ultimately fits into the pattern of discovery, if it is of any value. I think DeFreitas' work had considerable scientific value, even if a 'smoking gun' was not found. The publicity circus had far more to do with forces outside her control than with her own work.

I would like to point out one tiny piece of the puzzle which turned up in the attempts to replicate. The CDC labs were extracting nuclear DNA. DeFreitas insisted on using whole DNA to raise sensitivity, which ultimately became standard practice at CDC. Mitochondrial DNA is far more common than nuclear DNA in human cells. If the virus she was after did not infect mitochondria, one might expect whole DNA to dilute results, lowering sensitivity. A complete viral genome which can fit inside a mitochondrion, as shown in the pictures, has to be small. HIV and HTLV are too large. This sounds like a strong clue to the existence of a third class of retrovirus which was overlooked.

 

[Cort]

Which would be an incredibly important finding in a disease ME/CFS that causes total exhaustion of brain and body and thus very highly significant. Why was this ignored by the CDC?

It was hardly ignored...They spent two years on it.....Should they have spent more money on it? Perhaps..but let's not rewrite history. They spent about two years and reportedly several million dollars looking for it. Where was the NIH when they were actually devoting some resources to it? They were denying De Freitas' grants!

Correct. There is no evidence of HTLV virons inside mitochondria. MLV class virus are the only viruses shown to infect mitochondria and alter CREB gene function, and XMRV is an MLV class virus....which does make one wonder about XMRV in ME/CFS. This will be the next bombshell in my opinion. The reason for cellular exhaustion in ME/CFS proven once and for all. XMRV fits this perfectly.

That would be nice! Who knows?

Correct, Dr Cheney stated the CDC said they 'couldn't afford the plane ticket' to fly to the lab. A very bizarre thing to say when DeFreitas was possibly sitting on the cause of ME/CFS and very very suspicious coming from a health organisation that stole $10 million from the American tax payer's funding into CFS and put it into 'other conditions' before being exposed.

That happened about 7 years after the DeFreitas finding.

. A La 'delayed' publication of the Alter/Lo paper, again for political reasons (censorship of the truth).

If delaying the publication of the Alter paper is censorship of the truth then what is publishing it? Promotion of the truth? That delay may very well have been the best thing that happened to the Alter paper. He got to see what the CDC did and then counter it. Its only censorship if its buried - it doesn't sound like its being buried does it? I suggest another interpretation is in order. They had two findings from both groups and asked them both to recheck their data. Given what is occurring that makes more sense to me.

Post XMRV, Dr Klimas said, someone's going to 'go down' for this, and right she is. Globally, there are too many people dead and severely disabled from CFS, and too many highly intellectual people who have spent years collecting, investigating, then cataloguing the whole CFS tragedy for everyone to escape on a boat off to Hawai and an early start to daily 'morning golf'. Most will, but all clues lead back to the CDC and unfortunately for them decisions that were indefensible at the time were indeed made by high ranking officials.

Everyone wants to make the CDC the fall guy but the NIH is equally responsible if not more so - they are the premier research facility in the land; their budget is much higher than the CDC's and they are a pure research group while the CDC is not. Given that they should be spending 3 or 4 times as much on CFS as the CDC but they're spending the same amount; eg you could argue they are hurting us more. Their willingness to turn away from CFS actually has had worse consequences than the CDC's doing so.

Look at this way. At least the CDC tried, however inadequately to find DeFreitas virus - the NIH NEVER EVEN TRIED! They rejected all her grant applications. If it was up to the NIH no further work would have been done on her virus at all.......that's the NH for you. :Retro mad: If you look at it that way the CDC was light years ahead of the NIH on CFS - at least they devoted SOME money and resources to it

I'l leave you with an interesting quote worth noting from ABC News nightline TV broadcast on CFS in America well over a decade ago

Dr Philip Lee - Assistant Secretary of Health

''I would say it would be a retrovirus, or a virus I would think so''

Why would the CDC ignore the US Assistant Secretary of Health and an electron microscope that finds CAV in CFS patients, and instead employ Stephen Straus to publically state that CFS is form of psychoneurosis and that the documented outbreaks were 'mass hysteria'.

You're mixing apples and oranges. Strauss was from the NIH. He had nothing to do with the CDC.

There's way too much focus on the CDC. The NIH is the Institute that should be leading the way on figuring out CFS; that's what they do.....that's their job...and to a worse degree than the CDC, they've turned their backs on this disorder. The real bad guy is not Reeves - it's Fauci!

 

[leaves]

According to my Washington contact, the Lo/Alter paper will be released tomorrow and published on Tuesday. The paper will confirm that XMRV and its variants (human MLV-related viruses) are associated with CFS and are also present in the blood of healthy controls. The WPI "will be completely" vindicated (including the variants disclosed by WPI in support of the Science paper) and the negative studies are likely the result of the non-use of the Lombardi primer sets or or other equally sensitive tests. The study apparently blows away the "contamination" argument, finds the retroviruses in over 85% of the CFS patients, and almost 7% of the controls. Maybe someone can get an advance copy on Monday or early Tuesday.

Omg!!
Thanks for sharing this ... Wow ...
So there is more retroviruses?? So that means we need to figure out retroviral treatment for several viruses.. Wow.. Now is the time to buy stock in Pharmaceutical companies i guess ... Just WOW

 

[Cort]

AMAZING. I got tingles up my spine reading that......

 

[John Leslie]

Omg!!
Thanks for sharing this ... Wow ...
So there is more retroviruses?? So that means we need to figure out retroviral treatment for several viruses.. Wow.. Now is the time to buy stock in Pharmaceutical companies i guess ... Just WOW

I have been told that XMRV is a human MLV-related virus. The WPI has been reporting for some time the existence of significant variants. I read somewhere a link to their patent filing that talked about the discovery of multiple sequences different from Silverman/Abbott. I don't think it necessarily means that each variant would be classified as a "new" retrovirus; but I am no scientist.

 

[dannybex]

Omg!!
Thanks for sharing this ... Wow ...
So there is more retroviruses?? So that means we need to figure out retroviral treatment for several viruses.. Wow.. Now is the time to buy stock in Pharmaceutical companies i guess ... Just WOW

It's great news, even if one turns out to be XMRV-negative, as it will SHUT UP the psychologizers, or at the very least, get them to think twice before speaking.

Also interesting that both the patient percentages and the 'healthy' percentage is higher in this study. Did they use even more sensitive tests...?

 

[Quilp]

Hello Dannybex, I hope you are right about the 'psychologizers' but let me tell you there is not a chance in hell that they will keep quiet. Wessely and White will claim that this doesn't prove anything, that those with XMRV got it because their immune systems are weakened by us having 'abnormal illness beliefs'. On the day the Science paper broke last year he was in the Independent newspaper ( respected over here in the uk ) claiming that it was a 'spectacular' discovery before stating that these findings weren't validated and that it didn't explain our 'childhood trauma'.
When I am sat in my boxer shorts, smoking a cuban cigar, on a beach in Spain, having fully recovered some twenty years earlier, the psyche lobby will still be fighting their corner, only this time they'll be doing it without any taxpayers money. We can only hope they are marginalised and ridiculed. Me, I hope they go to jail.

Kind regards, Mark

 

[leaves]

I have been told that XMRV is a human MLV-related virus. The WPI has been reporting for some time the existence of significant variants. I read somewhere a link to their patent filing that talked about the discovery of multiple sequences different from Silverman/Abbott. I don't think it necessarily means that each variant would be classified as a "new" retrovirus; but I am no scientist.

Aaah so they are different strains... That makes sense. Fascinating. I wonder how the public will react. Granted cfs is much less confrontational as the aids epidemic, because there are no dead bodies but people waste away in the intimacy of their own home, but still

 

[leaves]

It's great news, even if one turns out to be XMRV-negative, as it will SHUT UP the psychologizers, or at the very least, get them to think twice before speaking.

Also interesting that both the patient percentages and the 'healthy' percentage is higher in this study. Did they use even more sensitive tests...?

Indeed!! So let's say 2% of the pop has ( mild) cfs, then 5/7 th of those infected may have lupus/ diabetes/ autism/ arthritis/ cancer; depending on genetics peoples immune system maybe affected in different ways. Could also be that cfs is
a different retroviral strain, but I think not.

 

[Mark]

Omg!!
Thanks for sharing this ... Wow ...
So there is more retroviruses?? So that means we need to figure out retroviral treatment for several viruses..

I could be wrong, but I don't think these related MLVs are (necessarily) retroviruses, my understanding is that they are related viruses. I think one of the (rumoured) theories is that XMRV combines with other viruses once inside the human host. I'm weak on the details there (partly because I didn't really watch that particular video ) but I do like the idea that this family of viruses need to work together and piece together the fragments in order to have significant effects. Like a computer virus delivering its elements in bits, getting past the defences, and then recombining once inside.

The mention of related MLVs really could set the cat amongst the pigeons. Several MLVs are known to be present in vaccines but they are considered harmless to humans. But if XMRV has the capability to combine with them and/or activate them somehow...and if that's what's coming out of the forthcoming study...that would be massive news in relation to vaccine safety...and the whole story could start to unravel pretty quickly if that were true...