DeFreitas 1991 Retrovirus/CFS Study

[PoetInSF]

I've heard somewhere that Jay Levy, one of the XMRV discoverers I believe, wasn't able to reproduce De Freitas' work either. Maybe he'll have something to say about it if what she claimed discovered was indeed XMRV.

 

[cfs since 1998]

Actually, I don't think so...she had the right idea, but hadn't isolated the correct virus.

The virus she isolated remained unidentified. It had one genetic sequence similar to HTLV-II but not others and she speculated that it was a different type of retrovirus altogether. She named it "CFIDS Associated retroVirus."

 

[winsomme]

Dr DeFreitas - CFS Radio Show

Dr DeFreitas did an interview on the CFS Radio Show run by a Dr Mazlen in the NYC area back in the 90s i believe.

You used to be able to get the transcripts for all the people interviewed on the show. Many are still available on various sites but I don't see the one with Dr DeFreitas. Dr Mazlen interviewed many of the names that we have seen associated with CFS over the years and the interviews were very interesting.

I remember the interview with Dr DeFreitas quite well. She mentioned he studies looking for the HTLV-II virus and she also mentioned another scientist in her lab spotting something under the microscope in the CFS samples that seemed to be affecting the mitochondria of the infected cells.

I am hoping that one of our resourceful posters here will be able to track down the transcript of that interview. I think we will find it very revealing.

She also mentioned that she had been in a car accident and that was why she had to give up her lab....

anybody else remember this radio show and the transcripts?

 

[Alice Band]

The interview is still on the Netherlands ME-NET group

(start of interview)

Dr. Mazlen
Our guest today is Elaine DeFreitas who is a pioneer of the virology
area as well as a specialist in retroviruses, but more importantly Dr.
Elaine DeFreitas, much to her credit was one of the first people to
tackle Chronic Fatigue Syndrome as a serious disease and that's why
I'm honored to have her as a guest today. She's spent a lot of her
time and effort and also significant resources in terms of grant money
and technicians looking into a viral etiology for Chronic Fatigue
Syndrome and we owe her a debt of gratitude for that because she
helped to give the disease creditability at a time when it was really
lacking creditability. Now, without any further delay, I want to
welcome to our show our eminent guest, the renowned virologist Elaine
DeFreitas from Florida. Elaine welcome to our Chronic Fatigue Syndrome
show.

Dr. DeFreitas
Thank you very much, Dr. Mazlen, it's a pleasure for me to be here.

Dr. Mazlen
I think since it's really basically your show today to talk about
things, you might want to give us a little background because you got
into studying the viral etiology or looking for a viral etiology for
this disease very early. Maybe you want to just mention what led you
into it or what prompted you to do that.

(and from the end)

Dr. DeFreitas
Unfortunately, my laboratory won't be doing anymore work on this
project and a cruel fate of my being in a motor vehicle accident and
the resulting disability I have from that,

I was unable to maintain my
laboratory but I can tell you that other people, other very brave and
hardworking people are still working on this problem and I really feel
that in the next year there will be a number of very definitive
studies coming out indicating not only what may cause this disease but
an effective treatment for it as well and what I had mentioned before,
a diagnostic test.

And this, I think, once and for all, these
findings, coming out of the number of excellent medical schools in the
country, will put an end to the debate that involves whether this
disease is merely another type of depression, which it is definitely
different from and will show it to be an infectious disease and a
disease which is treatable and I think the patients will be happy to
hear that.


https://listserv.surfnet.nl/scripts/WA.EXE?A2=ind9711b&L=me-net&D=1&O=D&P=1966

Maybe you will have to join the group to read it all?

 

[anne_likes_red]

Retrovirus links were studied elsewhere too...

I read this on the Associated New Zealand ME Society website recently.

"ANZMES members will recall that Nancy Klimas visited New Zealand in 2006, during that time we visited Dr Mike Holmes who had worked at Otago University Micro Biology Department and had found retrovirus back in the early 1990s in the blood of those with ME/CFS, and had presented a paper on this in 1994 together with electron micrographs of the virus. Unfortunately due to ill health Dr Holmes was unable to publish all the research he completed. Another international specialist is now considering doing a review on this."

Heather Wilson President ANZMES

http://www.anzmes.org.nz/retrovirus_xmrv_and_mecfs.html

I haven't located the specific 1994 paper mentioned above online. (Dr Holmes was published as MJ Holmes and Michael Holmes.)

 

[Alice Band]

I don't have the paper but I remember the virus and Dr Holmes. By coincedence I did a search of all my old notes and emails and research saved.

It was thought to be like a Visna virus at the time (sheep retrovirus member of the Lentivirus family?)

If I find the paper I'll post more info here

 

[Cort]

I was just standing off to the side and heard him say to someone else 'this is not Elaine DeFrietas virus'. For what its worth! Time will tell all. Wish I knew how she turned out in the end - she sure went through a rough, rough time.

 

[anne]

Maybe he meant it in a "Not your mother's jeans?" kind of way?

No?

Okay.

 

[Michelle]

Both DeFritas and Mike Holmes were marginalized by disability? Wow we've had the worst luck with this disease. Nice to see it starting to finally change. Hope it changes a bit for Drs. DeFritas and Holmes too.

 

[condra]

Fascinating thread.

Has anyone been able to get in contact with Elaine DeFreitas since XMRV-gate?

 

[Mark]

There is no evidence that... (redux)

Just a rather amusing and fairly sophisticated version of "There is no evidence..." that tickled me...

This quote is quite telling:

"We are in the very early days," said Stuart Le Grice, director of the National Cancer Institute's Center of Excellence in HIV/AIDS and Cancer Virology..."The data need to be confirmed and repeated. . . . We need to know that it is a cause and not just a passenger. In a sense, we are at the same stage as we were when HIV was first discovered. Hopefully, we can take advantage of what we learned from working with it."

Le Grice emphasized, however, that traces of the virus had been found in blood samples preserved for 25 years. "This is not associated with a new and spreading disease. We are not on the verge of an epidemic," he said."

Cold_taste described this as weird; I'd add 'sophisticated' to that description.

Not a "new and spreading disease" - TRUE. Just a "spreading" disease.
Not "on the verge of an epidemic" - TRUE. In the middle of one.

Isn't language wonderful? It is so useful for communication...

 

[starryeyes]

Right on Mark! Well said.

 

[starryeyes]

I don't have the paper but I remember the virus and Dr Holmes. By coincedence I did a search of all my old notes and emails and research saved.

It was thought to be like a Visna virus at the time (sheep retrovirus member of the Lentivirus family?)

This is what I came across after XMRV was announced on 10/8:

http://www.ncbi.nlm.nih.gov//pubmed/7595205

Type C retroviruses endogenous to various nonprimate species can infect human cells in vitro, yet the transmission of these viruses to humans is restricted.

Were they right?

Complement-mediated inactivation of amphotropic retroviral particles was found to be restricted to human and other Old World primate sera, which parallels the presence of anti-alpha-galactosyl natural Ab. Blockade or depletion of anti-alpha-galactosyl Ab in human serum prevented inactivation of both amphotropic and ecotropic murine retroviruses.

Finally, down-regulation of this epitope on the surface of murine retroviralparticle producer cells rendered them, as well as the particles liberated from these cells, resistant to inactivation by human serum complement.

Our data suggest that anti-alpha-galactosyl Ab may provide a barrier for the horizontal transmission of retrovirus from species that express the alpha-galactosyl epitope to humans and to other Old World primates.

Further, these data provide a mechanism for the generation of complement-resistant retroviral vectors for in vivo gene therapy applications where exposure to human complement is UNAVOIDABLE.

O_O

And, does anybody remember this that Cold Taste of Tears posted further up this thread and I had expanded on before, albeit not very readable? This article is all about the Retrovirus CAV that Defreitas found: http://www.ncf-net.org/forum/revelations.html

These quotes should be easier to read:

Characterization of cracr proteins of CAV (CFS Associated Virus) reveals that "animal retroviruses that have been shown to express cracr proteins of these molecular weights are: primate D-type retroviruses; primate C-type; lentiviruses (EIAV but not HIV); mouse B-type (MMTV)

Sure sounds a lot like retrovirus XMRV to me. They were also considering a lentivirus here Alice, but they weren't sure. Their tools for finding viruses and retroviruses are much more refined now but other researchers around this same time thought it might be a lentivirus too. They weren't sure, but had it pegged as several possibilities back then.

animal retroviruses that have been shown to express cracr proteins of these molecular weights are: primate D-type retroviruses; primate C-type; lentiviruses (EIAV but not HIV); mouse B-type (MMTV); avian C-type retroviruses, and perhaps Foamy (Spuma) viruses.

The inventors then provide additional characteristics of the retrovirus such as its ability to infect both T and B Cells.

XMRV infects both T and B Cells.

The inventors (De Freitas et al) also discuss the details of a CFIDS VACCINE and the VACCINE composition!

What a shame that was never created.

As far as I'm concerned here, there needs to be a criminal investigation of the NIH regarding why they refused to fund upon submission of all this data. Maybe then, some heads will roll and we'll begin to get some real answers! After all, each and every patient certainly deserves this and so much more! - Alan Cochetto.

I'm not sure why Mr. Whittemore said XMRV is not CAV. I want proof! If they're not the same then we may have more than one infectious retrovirus in us.

the positive results seen in the Exposure Controls support the possibility that this CAV is capable of casual transmission to non-infected persons, as is the case with many non-human retroviruses.

Is this important to find out?

 

[MEKoan]

Am I the only one whose anger at the trashing of De Freitas' work now includes both the CDC and the CFIDS Assn?

No, you're not the only one.

Am I misremembering or wasn't it all covered in Osler's Web?

DeFreitas Disease.

 

[starryeyes]

I really like the sound of Defreitas Disease. Yes, this was all covered in Osler's Web.

Look what I just found that correlates with the first link I gave in the post above:

October 20, 2003
Gene therapy 'caused T-cell leukemia'
Insertional mutagenesis pinpointed as cause of T-cell leukemia in X-SCID gene therapy trial | By Jo Lyford

An unanticipated complication of gene therapy has been confirmed as the cause of T-cell leukemia in two boys receiving the pioneering treatment for X-linked severe combined immunodeficiency (X-SCID).

Fischer and colleagues at the Necker Hospital developed an alternative therapy based on the ex vivo transfer of the γc gene into autologous hematopoietic precursor cells, employing a vector derived from a defective Moloney murine leukemia virus.

“Until this report, retroviral insertion in the context of gene therapy has been considered an untargeted and largely random event,”

http://cmbi.bjmu.edu.cn/news/0310/106.htm

Looks like retroviruses are often used in gene therapy which Jenbooks pointed out earlier. It also looks like the scientists believed they wouldn't cause humans diseases when used in this way. Looks like they were wrong.

 

[cold_taste_of_tears]

RE: The missing scientist Elaine De Freitas.

Ok run this by me again

Scenario: You're disabled from a car accident, bed ridden say... and you found something amazing that no one else would listen to you about. You know what you found, the CDC won't listen. You even published it, it's ignored. You're a scientist - this is your life's work to further the cause of the human race and alliviate suffering/disease.

And you just give it all up as you can't walk? Never thought of putting all in a brown envelope and giving it to a friend to 'keep' - even if you were paralysed and had to talk with a speech computer? (People can take degrees being this disabled). To my knowledge she isn't paralysed. Even if she was, if she can blink - she can give commands to questions.

Nothing is ever as it appears, especially if you accidently infect the worlds population with a DNA mouse virus. (Not that anything like that would ever happen) - whilst at the same time simutaneously these same infected people are being told they have somatization/hysteria that is effectively treated with altering the way you think, keeping an 'activity diary' and positive thinking! LOL

Or maybe not LOL for the people dead, dying, and whose lives have been utterly destroyed.

Yea, I think I'll just 'retire' and forget I found an unexplained retrovirus in people accused of being mentally ill - who have no signs of mental illness.

GREAT IDEA ELAINE!!!!!!!!!!!!!!!!!!!!!

Except I imagine she had no say in the matter.
Shades of Dr David Kelly Perhaps?
http://www.dailymail.co.uk/news/art...rdered-MP-spent-year-investigating-death.html

We haven't heard one peep out of her.
Isn't that extremely strange?
Think about it....the potential pioneer of discovering the next AIDS is too sick to comment, as is her family, as are her old co-workers.
As are the people who published the research, as is the CDC.

Are they all suddenly elective mutes?
Think about it....

 

[starryeyes]

Cold- Good points about DeFreitas.


And that is an interesting article about the Kelly Affair. Here are some highlights:

Posing as a freelance journalist, he had attempted to contact the key policemen involved in investigating the case. In this he was unsuccessful but within an hour he received an unexpected return call.

The person on the other end of the line did not bother with formalities, but instead cut to the quick. How would my contact welcome a full tax inspection of his business, VAT, national insurance, the lot?

Life could be made very difficult, he was told. How did he fancy having no money?

"When everyone is out to get you, paranoia is just good thinking."

He told his friend of his interest in the Kelly affair and also of the threatening phone call he had received.

His friend's reply was a serious one: he should be careful, particularly when using his phone or his computer. Moreover, he should let the Kelly matter drop.

Dr Kelly's death had been "a wet operation, a wet disposal".

He also warned him in very strong terms to leave the matter well alone.

He told me that three weeks after our meeting in Exeter, his house had been broken into and his laptop - containing all his material on Kelly - had been stolen. Other valuable goods, including a camera and an LCD television, had been left untouched.

Dr Kelly also had intimate knowledge of biological weapons research in apartheid-era South Africa that some might have preferred not to see the light of day.

It has also been suggested that he had dealings with Mossad, the Israeli secret service, about illegal bacterial weapon activity.

"We have ways of keeping you quiet."

 

[annunziata]

Dr. de Freitas' silence

Cold Taste of Tears,

I met Dr. de Freitas and I can tell you she was one feisty woman. I don't know why there has been no comment from her. I've wondered if Hillary Johnson has spoken to her. I would really like to hear what she has to say about XMRV. I hope she feels some measure of vindication, at least.

Amy

 

[jenbooks]

Gene. Therapy

I'm on iPhone so will be brief. MLV caused leukemia because they didn't remove promoter sequences from the virus. They removed other potentially harmful parts. These promoter sequences can switch on our own oncogenes (we were born with) and lead to malignancy. It's a little more complex than that but that is the basic idea.

Similarly however XMRV may switch on oncogenes or upregulate replication of other viruses.

I really like the sound of Defreitas Disease. Yes, this was all covered in Osler's Web.

Look what I just found that correlates with the first link I gave in the post above:


http://cmbi.bjmu.edu.cn/news/0310/106.htm

Looks like retroviruses are often used in gene therapy which Jenbooks pointed out earlier. It also looks like the scientists believed they wouldn't cause humans diseases when used in this way. Looks like they were wrong.

 

[starryeyes]

Thanks Jen,

Does that mean they can now safely use MLV in gene therapy?