DeFreitas 1991 Retrovirus/CFS Study

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As many of you may know, in 1991, Elaine De Freitas of the Wistar Institute produced a paper positing that a retrovirus appeared to be responsible for ME/CFS.

Her conclusions were soundly dismissed and no further work done on the subject. 18 years later, it is looking very much like she may have found XMRV.

For those of you who wish to read the paper, it is entitled:

"Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome"


Many thanks to Marie for bringing this to my attention.
 
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Thank you for posting this! The full text article was very fascinating. Disturbingly, it noted that healthy nonsexual contacts of CFIDS patients had antibodies to the HTLV-like-virus (surely it was XMRV) as well as noting that healthy contacts of patients had NK cell abnormalities. Anyway, it's so sad that this research was undeservedly panned and that they may have been on the right track all along.
 

Cort

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The same virus? Is that possible? I assumed that they were different. Dr. DeFreitas looked for gag and tax sequences associated with what she believed to be a HTLV-II retrovirus. Dr. Mikovits looked for gag and env (I think) sequences associated with this XMRV retrovirus. Can these be the same thing?

Can you imagine if it was the same virus? It's almost too upsetting to think about.
 

Cort

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Here's the 1993 CDC Paper - all those researchers have moved on. In his recent blog Dr. Cheney goes over the controversy over the tests. Note that he says HTLV-II - like genes - so maybe the type of virus wasn't nailed down. There's been almost no study of retroviruses in chronic fatigue syndrome since then. From his blog

Based on continued evidence of unusual immune disturbances by flow cytometry including CD4 depletion (ICL) and high RNAse-L activity while in Charlotte, I contacted Elaine DeFreitas PhD at Wistar who ultimately found HTLV-II-like genes associated with CFS (PNAS 1991). Her work was assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Gow) or null responses to cases and controls (per a CDC scientist). Elaine argued that these two scientists with diametrically opposing results manipulated the magnesium concentration which affects the primer stringency and got whatever result they wanted to make their opposite claims. Ultimately, the search for a retroviral link dissipated and was lost until Judy revived the long search. I congratulate her and the W-P Institute.
Ann Intern Med. 1993 Feb 15;118(4):241-5.
Assessment of a retrovirus sequence and other possible risk factors for the chronic fatigue syndrome in adults. Khan AS, Heneine WM, Chapman LE, Gary HE Jr, Woods TC, Folks TM, Schonberger LB.


OBJECTIVE: To assess whether the human T-lymphotropic virus type II (HTLV-II) gag gene sequence, a purportedly new laboratory marker of the chronic fatigue syndrome (CFS), and other possible risk factors for CFS, particularly those associated with retroviral transmission, are associated with well-characterized CFS.

DESIGN: Two matched case-control studies. SETTING: The metropolitan Atlanta area. PATIENTS: Twenty-one patients with CFS who were identified by the Centers for Disease Control and Prevention CFS surveillance system; 21 CDC employee controls (laboratory study) and 42 neighborhood controls (risk-factor study) who were matched to patients by age, race, and gender. MEASUREMENTS: Peripheral blood lymphocytes and leukocytes were assayed for the HTLV-II gag gene sequence by polymerase chain reaction and specific Southern blot hybridization. Questionnaires elicited demographic and clinical information and a history of exposures associated with retrovirus transmission (for example, blood transfusions, sexual practices, intravenous drug use).

RESULTS: All patients were white and 86% were female. The median age at illness onset was 34 years (range, 16 to 51 years). The HTLV-II gag gene sequence was not identified in the blood of any patient or control under conditions in which the appropriate assay controls were positive.

No statistical differences were observed between patients and controls in frequency of blood transfusions (10% compared with 7%), median number of sex partners before illness (3 compared with 3), bisexual or homosexual behavior (14% compared with 7%), intravenous drug use (0% compared with 0%), and other factors associated with retroviral infection.

CONCLUSIONS: The HTLV-II gag gene sequence was not a marker for CFS in this small study of well-defined patients, nor did other characteristics of the patients and controls support the hypothesis that a retrovirus, transmitted by usual modes, was a cause of CFS.
 

dannybex

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Following up...

Cort, I cannot reveal how I know this, because of confidentiality, but Judy believes Elaine found XMRV in all the CFIDS patient samples, and Judy wants to prove it and publish it.
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, who organized the meeting but was not involved in the new study. "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."

I'm still curious to know if there are any tissue samples saved from earlier epidemics...like back in the 1950's, or even 1930's...?
 
C

cold_taste_of_tears

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If millions of people have ME CFS (we know this), who are infected with XMRV which is infectious, how is it not an epidemic?

Surely it's irrelevent if something is new or old, it doesn't vanish the amount of people who have it.

Kind of weird statement there from Le Grice.
 

Roy S

former DC ME/CFS lobbyist
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Summer,
Thank you. :) You put a smile on my face that's going to last quite a while. I got to know Elaine when she was doing that research, and I have always wanted her to be vindicated. She knew she was putting her career on the line. She is also a nice person. She even came to Washington to lobby with us.
I'm certainly no scientist, but after she was trashed I still said that I thought she was onto something.
We will see how this all works out, but I am impressed by the folks who set up the WPI as an independent organization. That was wise.
Roy
 

Daisymay

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Following up

Danny thanks for these quotes, where did you get them from please? They are very good.
 

Summer

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Summer,
Thank you. :) You put a smile on my face that's going to last quite a while. I got to know Elaine when she was doing that research, and I have always wanted her to be vindicated. She knew she was putting her career on the line. She is also a nice person. She even came to Washington to lobby with us.
I'm certainly no scientist, but after she was trashed I still said that I thought she was onto something.
We will see how this all works out, but I am impressed by the folks who set up the WPI as an independent organization. That was wise.
Roy
Hi Roy,

Isn't it nice to have something to smile about regarding that, after all these years. Many who knew I was in that research have heard me say over and over that until Elaine's work is vindicated, I will not feel total vindication. I trust Judy when she says it is coming, and I can hardly wait!
 

dannybex

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If millions of people have ME CFS (we know this), who are infected with XMRV which is infectious, how is it not an epidemic?

Surely it's irrelevent if something is new or old, it doesn't vanish the amount of people who have it.

Kind of weird statement there from Le Grice.
I think he meant because it's difficult to "catch". Spouses and siblings have been found to have the virus, but are not sick, even though they've lived together in some cases for decades.

Just like not everyone with prostate cancer had the virus. It will take awhile (to say the least) before they have answers...
 

kolowesi

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Holy Exploding Mitochondria, Batman!

Hi guys. Posted on another forum, thought it might be useful?
If it's is, maybe Cort could write something on the Phoenix blog!

It's too big to be missed, if it's accurate.

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

http://www.cfs-new.org/joan.htm :(
I've only dundered my way through the first one so far. This explains So Much.

If I remember, 96% of CFIDS samples were positive for ciguatera epitope, which later was linked to fragments of mitochondrial wall. I was positive, myself. Also had very low absolute B cell count, less than 1/4 normal and low CD4 T cells (275, AIDS starts at 200) early in my illness.

Maybe it's not mitochondrial dysfunction, it's mitochondrial destruction.

Thanks. Will go look for the Hokama paper about the mitochondrial wall fragments and ciguatera epitope. Richvank had to explain it to me before.

Kelly
 

Daisymay

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Mitochondria and XMRV

Yes the patent and Defreitas findings of the retrovirus in the mitochondria is extremely interesting.

I had a test done over here in the UK, called a translocator test, it's to do with the ADP/ATP transport across the mito membrane from the cytoplasm of the cell if I remember correctly.

Well I had a trace of glutathione and sulphate conjugate there but also a trace of viral RNA!

I also had very low levels of mitochondria, approx 60% of normal numbers - no wonder I'm knackered! So maybe the virus destroys th mitos?

As for the ciquatoxin info that is fascinating, hadn't realised it is inked to mitochondria, wow this is all fitting in, thanks for that Kelly.

BW,
Daisymay
 
C

cold_taste_of_tears

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Hi Daisy, thanks for telling us that.

So if you have viral DNA on your TLP study, it shows the virus is attacking the mitochondria, causing it to be destroyed = exhaustion?

And this is why no mitochondria (or should I say rarely), studies for mitochondria disease are positive in muscle biopsies because the aren't looking for the correct fault!

E.g. this would be an immune attack against mitochondria - hence the poor ATP function ME CFS patients have?

That's quite incredible in my view, I've never heard of that before.
 

Summer

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Wait, "all your friends" as in your friends who also had symptoms of ME/CFS? Or "all your friends" as in even people you knew who didn't have symptoms?

asus
My CFIDS friends who were tested in June 1991 for Elaine DeFreitas's retroviral sequences. Two of my best friends tested positive in that same larger study.
 
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The same virus? Is that possible? I assumed that they were different. Dr. DeFreitas looked for gag and tax sequences associated with what she believed to be a HTLV-II retrovirus. Dr. Mikovits looked for gag and env (I think) sequences associated with this XMRV retrovirus. Can these be the same thing?

Can you imagine if it was the same virus? It's almost too upsetting to think about.
It is not only possible they were same virus, but I think it is very likely, and from what somebody else posted Dr. Mikovits also thinks they are the same.

The DeFreitas 1991 article repeatedly uses the phrase "HTLV-II-like", meaning that they weren't really sure what it was, only that it had similarities to HTLV-II. It seems that they suspected they were looking at a new virus. The last sentence of the article states, "In any case, biological characterization of this agent and its role in the pathogenesis of CFIDS awaits its isolation."