DeFreitas 1991 Retrovirus/CFS Study

starryeyes

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Yes Justin, after XMRV was discovered in CFS on Oct. 8 people started asking if it was the same as DeFreitas's CAV. Dr. Bell made a statement that we shouldn't be asking about that and the WPI came out with a Face Book page announcement that XMRV is not DeFreitas's CAV. I can't recall if the WPI also stated we shouldn't be asking about CAV or what happened to it but I do recall that was the gist of what we were getting from them. I want to know why.

Dr. Nancy Klimas stated on video that they could be the same retrovirus but admitted she didn't know. I thought it was interesting that she completely side-stepped that question when you asked her:

Is this the same virus as the ��novel�� XMRV?
Justin Reilly

A.

Dr. Klimas responds:

Dr. DeFreitas was doing exciting work and should be congratulated for her early results suggesting retroviral infection in C.F.S. Since that time, technology has advanced in a dramatic way, giving investigators new tools to search for viruses that were yet to be identified in 1990-92, including the XMRV virus.

New antiviral drugs have also been developed that could potentially be effective in controlling this sort of infection. We also have a much stronger understanding of these drugs�� toxicity and safe use.

I congratulate the Whittemore Peterson Institute researchers for their diligent work. I am also very happy for Elaine today. I would also ask patients to be patient a little bit longer so that researchers can devise and perform the sort of clinical trials that will let us know if this virus is the linchpin in continued illness.

That was her entire answer to your question which I just inadvertently came across at:

http://www.dailystrength.org/groups/virus-killers/discussions/messages/8164016

Did you see this post of mine that's earlier in this thread about DeFreitas's CAV? Or did you mean that you want more information about CAV then the link to the CFIDS Foundation in this post provides?

http://www.forums.aboutmecfs.org/sh...trovirus-CFS-Study&p=9149&viewfull=1#post9149

I wish more scientific researchers would look into this situation and tell us if this CAV is a retrovirus that could also be causing CFS.


This is from Dr. Bell's current letter of appeal for funding the WPI:

• In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney, and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Ostler's Web by Hillary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI.


Thank you.
David S. Bell MD, FAAP
 

Robyn

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This is a little off track but. The way I feel about it we are constantly being experimented on. Just look at all the drugs as an example. I took hismanal for a good 6 or 7 years and then it was recalled. Celebrex is another that come to mind. It's like either people start having bad reations after a period of time or there's a problem with it years later. Then there are the vaccine contaminates recently found. Then how about the food and the lack of proper testing for ecoli, mad cow, and salmonella. There's also melamine in baby formula and the problem now with the chemical in plastics (that is a hormone disruptor) this is also in baby bottles and pacifiers. Give me a break most of it is about money. I have worked for a drug manufacturer, a meat wholesaler, an egg wholesaler, and the government. I've seen what medications and additives that are fed to cow's and chickens. At least finally it seems that they are trying to have some accountability with the transformation changes in government. But things that have happened and some that continue to go on at the expense of other human beings, is criminal in my book. I do not trust the CDC or the FDA because they have continually allowed things to go on that harm other humans. And most of it is about greed.
 

dannybex

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The National CFIDS Foundation..."Why The XMRV Hype?"

Does anyone subscribe to the NCF's newsletter? A friend* who did told me she wrote to Gail Kansky back in Nov-Dec, and got an email back which basically suggested they were very, very skeptical about XMRV, even questioning the motives of the WPI (paraphrasing).

They don't have the complete newsletter online, but do list this headline from their winter issue:

"Why The XMRV Hype?"

http://www.ncf-net.org/archive.htm

I most certainly could be wrong (FBS -- Foggy Brain Syndrome) so hoping someone can clarify the NCF's position on XMRV and the WPI?

d.

p.s. I asked this friend a couple months back if she ever got the hard copy of the newsletter...she did...but had already tossed it out.

p.s.p.s. As I posted six months ago...I too wonder why, if Defrietas found a retrovirus, and it was so important, all documented in Johnson's book, then why isn't it important now? Why aren't researchers trying to find it again...?
 

citybug

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The Defrietas retrovirus was difficult. It didn't survive freezing. Showed up more in people who had been ill a certain amount of time. I think WPI's research and similarities to Osler's Web show that science still doesn't know that much about retroviruses or lots of viruses. Even HHV6 was controversial when discovered which they said was very large by electron microscope and desctructive in Osler's Web. And there hasn't been support from the CDC for looking at retroviruses in CFS. Other scientists couldn't get funded.

WPI was using viral assays from NCI and Cleveland Clinic looking at every known virus or they might not have found XMRV. I think all the electron microscope pictures of XMRV are from after they grew it in culture of prostate cells. It's usually not so visible. Dr. Mikovits said they wanted to know if it confirmed DeFreitas's research. They looked it up and found it was different from her measurements. It's just not the same one. What more can they say?

It could have swept through and been a co-infection in the big outbreaks. And get discovered again if there is ever funding for retroviral research in CFS/ME.
 

Bob

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Just a thought... Maybe there are all sorts of undiscovered retro-viruses which cause all sorts of diseases...

In the recent 'Breakthrough' magazine issued by ME Research UK, it says that the Swedish team, who ME Research UK have funded to investigate XMRV,
includes a researcher, Prof Blomberg, who has an interest in the links between retro-viruses and MS and schizophrenia... although I think they mean that he investigates endogenous retroviral particles/sequences, rather than exogenous retroviruses.
(Prof Blomberg is head of the Research Group of Clinical Virology at the University of Uppsala.)

Also, Judy Mikovits has said that she is open to the possibility of there being an XMRV type I and an XMRV type II...
and that she might only be able to detect XMRV type I at present.

I'm just reading back through this thread, so I might find the answer, but does anyone know why WPI is not investigating CAV in ME patients using their modern sophisticated technology?

And does anyone know if CAV has been confirmed to be a human exogenous retrovirus, or is it thought that CAV is human endogenous retroviral particles/sequences?
Ah, I have found an answer... there has been controversy about this:
Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist).

Do we know of any recent research on CAV?

This is a fascinating subject area.
 

flybro

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I'm just reading back through this thread, so I might find the answer, but does anyone know why WPI is not investigating CAV in ME patients using their modern sophisticated technology?

i belive there was a patent filed for in the testing procedures for the Defretias virus.

I cant find it but i was pretty sure there was alink on PR somewhere, perhaps in the library.
 

oerganix

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611
People said earlier in this thread that the CAA did have a hand in damaging the reputation of Defreitas as documented in Osler's Web. The CAA just keeps popping up everywhere.. I thought I could get away from their influence here in this subforum.. yikes.

What does this mean? What is "blinding information"?



Can you explain this better? Like how did Vernon's responses fuel your speculations that the CAA holds "blinding information"?

ETA:

Well they have made her discovery of a retrovirus in CFS go away, haven't they? What they did was explain that her retrovirus is not XMRV and then they told us to never bring up her discovery again and they certainly aren't. And by "they" I mean Dr. Bell, the WPI etc... The people I revere the most.

I find all this very confusing and intriguing.


By 'blinding information' I meant that somewhere I read that CAA held (past tense) the codes for the study where she seemed to have it "backwards". That is, the patients came out negative and the controls positive. (That reminded me of the study in UK that found ZERO XMRV...not likely.) At the time I read this, I wondered if CAA mixed them up, got them backwards. Wish I could remember where I read this, so I could explain why I got that "hunch". It wasn't Osler's Web; seems like it was someone else who was involved in CFS advocacy at that time, on some other site. IF this were true and they got the codes backwards, then it would be a question of was it a mistake or on purpose? This is where Vernon's rather odd reactions to WPI, XMRV and the Failure to Find studies made my mystery novel reader's mind go into overdrive.

I'm conceding that this could be nothing at all. But my hunches often have turned out to be right. (Yeah, I know, we remember the ones that did, and forget the ones that didn't.)

(to solve a 'crime' the detective needs to find opportunity, motive, method, all in a plausible suspect) IF the CAA held the blinding code on that one study, that would be opportunity; method would simply to swap them somehow; motive is the big question. As has been speculated here and elsewhere, CAA sometimes seems to simply want to stay in the ongoing 'business' of 'looking for' the cause and cure, but IF they are successful, they would be put out of 'business'. On the other hand, it could be that they simply were simple minded in wanting to be "on the team that's winning", (from a Bob Dylan song which can be found in the Paging Dr Yes thread, or on youtube), and it looked like the wind was not blowing in that direction. Then, as now, CAA seems to want to run with the 'in crowd' and not rock any boats involving the good ole boy power structure in the government, and by extension, government funding.

As for WPI and the deFreitas discovery, I am guessing that when they were doing their early search for all possible retroviruses, it didn't show up and XMRV did, so they went with it. I seriously doubt that they wouldn't persue it if they found a reason to suspect it. That samples are routinely frozen might explain why they didn't find CAV, if they indeed looked for it, in the samples they were working with. I trust that WPIs motives are above board. Even if XMRV turns out to BE IT, they will not be 'out of business'.

Like you, I would like to see CAV looked into again, with more recent equipment, techniques and knowledge. The economic climate doesn't look good for it, though, since at least superficially it looks like a dead end. Bell's reaction back then could be explained by his having a higher level of trust for the players involved, which may have been destroyed in the meantime. All speculation, of course.

Underlying both deFreitas' and Mikovits' work getting so much resistance is (perhaps unconscious) institutionalized sexist attitudes and the good ole boy network. Women are not immune to suffering from this condition...being biased against other women, and not all men suffer from it, as evidenced by Peterson et al. But like a blood stain in cotton clothing, it has seeped into CDC and other institutions and won't be removed easily, if at all. The fact that more women than men have CFS only compounds the problem.
 

jspotila

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1,099
Wasn't it the CAA who spilled the beans about XMRV sooner than the WPI wanted?

When the CAA learned of the WPI study and its imminent publication in Science, Kim McCleary and Susanne Vernon chose to violate a strict scientific embargo and sent copies of the paper to members of their board. This move can be construed as contempt for scientific protocol and disrespect for the scientists who labored to deliver this work.

This is absolutely NOT TRUE, and the way this misinformation continues to spread and persist should be of concern to everyone. The Association did not violate the Science embargo in any way. Furthermore, I was Chairman of the Board in October 2009 and I did not receive a copy of the Lombardi paper until late night on Friday October 9th after I requested it. I just dug through my old email to verify that my recollection was correct.
 
G

Gerwyn

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This might be true, however, what does this actually mean ? I've talked to a well known retrovirologist from Switzerland, and he told me they have in research a PERT-test(test for reverse transcriptase), something all retrviruses share, and it doesn't simply pick-up all retrovirus infections in humans. In fact, it is not even a very sensitive test, unless you have many virus circulating in your blood, which is often NOT the case with retroviruses, especially with HTLV. A retrovirolgist here in Belgium, studying HTLV performed a more sensitive test for detecting HTLV, but I forgot the name, it was something like leolia... That seems to be a more sensitive test for slow replicating viruses. But if it's applicable for other RV's ?

What has been confirmed, is that if the virus is only in cells, there is no test to find out, at least, that's what I understood. I don't know if you can get there through culturing, but I thought it was not possible.

OS.

You can easily pick up retros in cells if they are replicating by pcr if there are high titres.HTLV titres would be much higher than xmrv because the replication rates of a lentivirus are much faster than a gamma.Picking up a gmma in 1991 would have been very difficult.Picking it up in blood by PCR highly unlikely(even more so than now).they also would not have been looking for a GAMMA in 1991 because they did not know they infected humans.They(the CCD) only had tests for leniviruses.

They would have (as now) had to culture the virus to have had any chance.Only A TEM at the time would have identified a gamma retrovirus

Once again the message is if in doubt follow the instructions.the CCD lacked the humility and or motivation to do this.

perhaps they started this "there is more than one way to detect a virus" mythology
 

starryeyes

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This is absolutely NOT TRUE, and the way this misinformation continues to spread and persist should be of concern to everyone. The Association did not violate the Science embargo in any way. Furthermore, I was Chairman of the Board in October 2009 and I did not receive a copy of the Lombardi paper until late night on Friday October 9th after I requested it. I just dug through my old email to verify that my recollection was correct.


I do appreciate you checking that Jennie. Thank you.
Does this mean that Hillary Johnson is lying to us?
 

starryeyes

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You can easily pick up retros in cells if they are replicating by pcr if there are high titres.HTLV titres would be much higher than xmrv because the replication rates of a lentivirus are much faster than a gamma.Picking up a gmma in 1991 would have been very difficult.Picking it up in blood by PCR highly unlikely(even more so than now).they also would not have been looking for a GAMMA in 1991 because they did not know they infected humans.They(the CCD) only had tests for leniviruses.

They would have (as now) had to culture the virus to have had any chance.Only A TEM at the time would have identified a gamma retrovirus

Once again the message is if in doubt follow the instructions.the CCD lacked the humility and or motivation to do this.

perhaps they started this "there is more than one way to detect a virus" mythology

I do want to make sure you know that CAV is a DeltaRetrovirus.
 

starryeyes

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Andrew - I don't understand why the NCF isn't backing the WPI in the XMRV finding either. It makes no sense to me. Even though the WPI isn't acknowledging DeFreitas's finding nor any of the other researchers who have found retroviruses in us they still found an important retrovirus for CFS.

kdp wrote: It's just not the same one. What more can they say?

They can say there must be more than one retrovirus in us then.

Bob wrote: ...although I think they mean that he investigates endogenous retroviral particles/sequences, rather than exogenous retroviruses.

Interesting, but I'm only talking about exogenous retroviruses in CFS myself. Just to be clear.

Bob wrote: Also, Judy Mikovits has said that she is open to the possibility of there being an XMRV type I and an XMRV type II...
and that she might only be able to detect XMRV type I at present.

I didn't remember that but now that you mention it I do think I recall it. Well, that's good. I feel better now about this situation. I'm fine with them solely concentrating on XMRV right now. I do hope they can look into DeFreitas's retrovirus in the future.

I mean retroviruses are very important for us to know about in CFS.

Bob wrote: I'm just reading back through this thread, so I might find the answer, but does anyone know why WPI is not investigating CAV in ME patients using their modern sophisticated technology?

That is exactly what I want to know.

Bob wrote: Ah, I have found an answer... there has been controversy about this:
Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist).
Do we know of any recent research on CAV?

But you see, the CDC did find CAV as an exogenous retrovirus at one time and then couldn't anymore. Did you read my post above about how they used the wrong methods and the wrong cohort and is this ringing any bells?

flybro: i belive there was a patent filed for in the testing procedures for the Defretias virus.


This is the link about the World Patent for DeFreitas' CAV:

http://www.facebook.com/topic.php?uid=154801179671&topic=10395

I see you've visited that page before flybro. I'm glad you asked this specific question because I'd never seen this page before and lo and behold there ARE others out there who feel this is an important issue that's being swept under the rug.

also see this from Ireland about the World Patent

http://www.cfs-ireland.org/scientific/3.htm

1/3 of the Mitochondria's DNA is missing in ME / CFIDS !* The undulating protein, called criti, effectively can hide the retrovirus. The would effect your entire body, patients are advised to plot their CD cells (CD 4, CD8, CD19).*
Professor Alan Cocchetto, National CFIDS Foundation, USA. http://www.ncf-net.org*
and this they knew in 1991!!

oerganix wrote: IF this were true and they got the codes backwards, then it would be a question of was it a mistake or on purpose? This is where Vernon's rather odd reactions to WPI, XMRV and the Failure to Find studies made my mystery novel reader's mind go into overdrive.

Oh right. Thank you for explaining that. That makes sense. I came across that information several times last night but didn't know I should copy it for this discussion.

I trust the WPI too and I agree that they went with XMRV because that's what they found in us.

I do not think CAV looks like a dead end, not even superficially but I think major players painted it as such.
 
G

Gerwyn

Guest
I do want to make sure you know that CAV is a DeltaRetrovirus.

Hi Starry

unless we are talking about different things CAV only infects chickens. CAV is a member of the circoviridiae. or are we talking about some sort of shorthand.The human genome project enabled the initial discovery of XMRV because it represented a sequence that could not be accounted for.There is no indication of another HTLV certainly not one inserted in the DNA. If anyone has a copy of the original paper I would be very interested in seeing it.
 

jspotila

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1,099
So Hillary Johnson is lying to us?

A lie is intentional, and I have no basis to accuse Ms. Johnson of lying. Perhaps the misinformation was given to her by someone else and she did not attempt to verify it by checking with the Association or our Board before publishing it.

In any event, I have stated true facts: the Association did not violate the Science embargo and the Board did not receive the Lombardi paper in advance of its publication.
 

Hope123

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Messages
1,266
Dr. Bell is trying to settle this issue by trying to find his old patients, who were the subjects of the DeFreitas study and were positive for the HTLV-2-like virus, and testing them for XMRV. I think if he is able to accomplish this, it will help clarify issues.
 
G

Gerwyn

Guest
Gerwyn, CAV was the name that DeFreitas gave the RV she found in us. It stands for CFS Associated Virus, it's completely different from the chicken virus.

This is the closest I can come to the original paper:

http://www.ncf-net.org/forum/revelations.html

and http://www.cfs-ireland.org/scientific/3.htm


thanks starryeyes.
I have had a look at it and it is nowhere near as robust as the science study.i really don,t know how freezing could have killed a lentivirus.I think the CCD used the wrong primers by accident or design.The virus could have been an unusual serotype and a couple of primer sequences out and no cigar was the ccd work published.Do we know anything about

the viral sequence?
 

justinreilly

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thanks starryeyes.
I have had a look at it and it is nowhere near as robust as the science study.i really don,t know how freezing could have killed a lentivirus.I think the CCD used the wrong primers by accident or design.The virus could have been an unusual serotype and a couple of primer sequences out and no cigar was the ccd work published.Do we know anything about

the viral sequence?

CAV is not a Lentivirus or any other type C. It has HTLV II like sequences and the virus to which it is most similar is Simian D virus.

DeFreitas said in Osler's Web that the ice crystals that form when freezing can slice apart RNA sequences so they would be harder or impossible to detect with her methods.

DeFreitas said that CDC was finding CAV, but then dialed up specificity so much they totally lost sensitivity.
 

justinreilly

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...(to solve a 'crime' the detective needs to find opportunity, motive, method, all in a plausible suspect) IF the CAA held the blinding code on that one study, that would be opportunity; method would simply to swap them somehow; motive is the big question. As has been speculated here and elsewhere, CAA sometimes seems to simply want to stay in the ongoing 'business' of 'looking for' the cause and cure, but IF they are successful, they would be put out of 'business'. On the other hand, it could be that they simply were simple minded in wanting to be "on the team that's winning", (from a Bob Dylan song which can be found in the Paging Dr Yes thread, or on youtube), and it looked like the wind was not blowing in that direction. Then, as now, CAA seems to want to run with the 'in crowd' and not rock any boats involving the good ole boy power structure in the government, and by extension, government funding.

As for WPI and the deFreitas discovery, I am guessing that when they were doing their early search for all possible retroviruses, it didn't show up and XMRV did, so they went with it. I seriously doubt that they wouldn't persue it if they found a reason to suspect it. That samples are routinely frozen might explain why they didn't find CAV, if they indeed looked for it, in the samples they were working with. I trust that WPIs motives are above board. Even if XMRV turns out to BE IT, they will not be 'out of business'.

Like you, I would like to see CAV looked into again, with more recent equipment, techniques and knowledge. The economic climate doesn't look good for it, though, since at least superficially it looks like a dead end. Bell's reaction back then could be explained by his having a higher level of trust for the players involved, which may have been destroyed in the meantime. All speculation, of course...

Detective work is necessary for us to make any progress. Obviously psychology of the decision makers and politics have been much more important to the study of ME than scientific or social facts, so we must always keep these factors in mind and act on them.

I don't think CAA would sabotoge its own research. Their reputation was already suffering for funding DeFreitas. So negative findings would only hurt CAA further. If there were positive findings CAA would be the hero and much more respect and funding would accrue to ME research and CAA just as happened with AIDS which has 1,000x the NIH funding of ME now.

I think WPI didn't look for CAV because they were looking for all known viruses and CAV isn't considered to be a recognized virus by the scientific establishment. I think why they are not addressing CAV now is it is so wrongfully tainted that talking about CAV would harm their reputation in the scientific community which is already under such attack for having the audacity to find a recognized retrovirus (XMRV) in ME.

They have limited funding and they probably have their hands full with other projects. They might be waiting for their findings to be confirmed before they start pushing for research on CAV. That's just a guess, but if that is their strategy, I think it's a reasonable one.

That said, I emailed them in Nov asking them to pretty please with Splenda on top look into CAV and I didn't get a response. They were inundated with correspondence then so I didn't really expect to get a response.

I think it's very important for us to keep pushing for CAV work. I think CAA's research program is now good, but I really think they should sponsor some research into CAV.
 

starryeyes

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A lie is intentional, and I have no basis to accuse Ms. Johnson of lying. Perhaps the misinformation was given to her by someone else and she did not attempt to verify it by checking with the Association or our Board before publishing it.

In any event, I have stated true facts: the Association did not violate the Science embargo and the Board did not receive the Lombardi paper in advance of its publication.

I appreciate you digging into your email cache to find this Jennie. Thank you.