• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Two retroviruses...or even more?

dannybex

Senior Member
Messages
3,564
Location
Seattle
With the news yesterday from WPI's Facebook page that the retrovirus that Elaine Defreitas found is not the same as XMRV, does that mean 2 retroviruses are involved?

http://www.facebook.com/notes/whittemore-peterson-institute/fact8/184085913025

Or, is one connected with one subset, and (active) XMRV with a more severe subset as reported in the Science study?

Should follow-up studies test for both retroviruses?

Plus, if they've found two in the last 18 years, could there be other pathenogenic retroviruses involved?

Or, as Dr. Peterson suggested to Cort, does a weakened or dysfunctional immune system come first?

Questions, questions, questions...

Any answers?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Hi Dannybex,

We're both thinking along the same lines.

I reformatted the points the WPI make about the differences between CAV and XMRV.

These are the WPI's main points:[/B]

CAV is not a gamma (type C) retrovirus, because of its diameter, morphology, formation and location of intracellular virions.

XMRV is a type C retrovirus.


All CAV particles are the same shape and size, 46-50 nm. No forms budding from the cytoplasmic membranes are observed.

XMRV shows a budding type C retrovirus of 90-100 microns.

CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. No extracellular virus is observed.


XMRV Gamma (type C) retroviruses are 90-1100 uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.

The data describes in the De Freitas patent can be found at:http://www.ncf-net.org/forum/revelations.html These data are indisputable that XMRV is NOT the retrovirus described by De Freitas et al.

Well, De Freitas et al do say that CAV is infectious -
Chronic Fatigue Immunodeficiency Syndrome-associated virus, hereafter referred to by the name CAV may be morphologically characterized as a retrovirus, particularly a non-C retrovirus which is capable of infecting humans.
- so this brings us back to having 2 different infectious human retroviruses, and both may be murine retroviruses. And CAV was found in the mitochondria wreaking havoc from what I could ascertain and CFS has major mitochondrial dysfunction.

So unless De Freitas et al made an error and didn't discover an infectious human retrovirus in PWC, we have 2 infectious human retroviruses in patients with Chronic Fatigue Syndrome.

ETA: If we have 2 infectious human retroviruses in us then I want drugs made that combat them both!
 
C

cold_taste_of_tears

Guest
So unless De Freitas et al made an error and didn't discover an infectious human retrovirus in PWC, we have 2 infectious human retroviruses in patients with Chronic Fatigue Syndrome.


Hi, thank you for the information.

So do we know if XMRV also attacks mitochondria yet, impairing ATP function?

If not, and CFS/XMRV patients have low ATP for unknown reasons - this would mean we would need a diagnostic test for CAV pretty soon.

Would it be possible for this test to be developed and do you think the WPI have thought of this? (Developing a CAV test for CFS/XMRV patients).
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Hi Cold,

Your Sig is hilarious! I've been enjoying watching them change and so far, I know what they all pertain to.

The WPI or somebody better be looking for De Freitas's CAV in our mitochondria and I would really like to know if XMRV is the same as the JHK retrovirus that was found imbedded in HHV-6a that has been found infecting the basal ganglia of the brains of PWC according to the NCF although JerryH from Phoenix Rising says JHK has never been found in humans.

What they need to do is autopsy a CFS patient and look for JHK or XMRV inside the HHV-6a viruses if they find any.

I want to know if XMRV is affecting our mitochondria too although it sounds like it's not,
CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. No extracellular virus is observed.

XMRV Gamma (type C) retroviruses are 90-1100 uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.

http://www.facebook.com/notes/whittemore-peterson-institute/fact8/184085913025

I'm not sure if this means XMRV is not found in mitochondria and/or whether it has been found imbedded inside HHV-6A. Perhaps someone here knows.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
Thanks...

Thanks TeejKay so much for spelling it out more clearly. It's nice to know there are people here who can interpret the findings...my brain is just mush at times...can never tell when "The Fog" will hit.

I guess this will all take many months, maybe years to sort out.

Hopefully others will chime in on the possibility of other retroviruses (they've found two...could their be more, and what does that mean with regards to the XMRV news?), plus the chicken and egg question (although that might be waaay to soon to answer).

thanks again,

d.
 

Eric Johnson from I&I

Senior Member
Messages
337
The De Freitas paper will continue to be worth knowing and thinking about, but I'd give 80:20 odds that it is simply mistaken. Certainly at least 10% of biomed research papers are false, probably more. Discordant papers such as I described on the other thread are common as the rain, though there are generally not quite so many groups on each side. (I described the cytokine findings in depression; I believe that 5+ groups have reported such abnormal findings, and 5+ have reported normal findings.)
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
The De Freitas paper will continue to be worth knowing and thinking about, but I'd give 80:20 odds that it is simply mistaken.

Well, don't tell that to Hillary Johnson.

Wasn't the CDC crucified for negating De Freitas work?

Should it's relevance suddenly be dismissed because of the WPI's findings?
 
G

George

Guest
Only the science will tell the truth

Here's a theory while we wait for the science.

What if what DeFreitas isolated was reactivated endogenous retro virus like the HERV-K18 that Fresh Eyes has been following.

What if what DeRisi and Silverman found was the third Exogenous retro virus XMRV.

So what the WPI did was find XMRV in 95% of CFS patients and Dr. Mikovits statement about noticing other retro viral bits while they were looking for the XMRV was perhaps noticing reactivated Endogenous retro virus.
?????

Well, don't tell that to Hillary Johnson.

Wasn't the CDC crucified for negating De Freitas work?

Should it's relevance suddenly be dismissed because of the WPI's findings?

No Offense to Hillary Johnson but she's not a scientist she's a reporter. Her anger clouds her writing sometimes. She's been our biggest supporter and her anger has ferreted out a lot of abuses in the medical field. (not just toward CFS/ME but abuses in general) I bow to her energy and passion but I also understand that she's human. The theory's she has on casual contact are scary but aren't backed up with any science. According to her if you hold someones sweaty hand you will get, not XMRV but, full blown CFS. If that were the case, between the time she wrote her book and today every single person in the United States would be sick. It doesn't hold up.

I disagree with the casual contact theory anyway just based on the science that's out there in regards to virus and retrovirus'. A lot of people seem to think that an outbreak means that those individuals came down with XMRV/CFS. Much like having an outbreak of chicken pox or flu. I would posit that an XMRV infection builds up in an area via sexual liaison over generations. Producing second and third generation children that would have high viral loads. Then a trigger virus runs through that population. A trigger virus that is spread through casual contact like chicken pox or flu. This turns on the epigenetic triggers that allows XMRV to have free rein in the body.

Of course it's all just theory until the science comes out. Some of which may take a long time in the coming.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Really like the way you're thinking there, George.

Could explain the various, and varied, retroviruses that people have thought they've found in CFS over the years, but that didn't really pan out - different bits of re-activated endogenous material.

One caveat: would a reservoir of XMRV really have to build in order to cause an "outbreak"? Perhaps it's just the standard XMRV+ rate in healthy people meeting the 2nd triggering cofactor. My understanding is, for example, 5-ish% of those deployed in the first Gulf War got Gulf War Syndrome - not far off from the 3.7% prevalence of XMRV in controls.
 
G

George

Guest
The Fresh Eyes double activated End0/Exo retro virus whamy!

One caveat: would a reservoir of XMRV really have to build in order to cause an "outbreak"? Perhaps it's just the standard XMRV+ rate in healthy people meeting the 2nd triggering cofactor. My understanding is, for example, 5-ish% of those deployed in the first Gulf War got Gulf War Syndrome - not far off from the 3.7% prevalence of XMRV in controls.

I hope you like it, it's your theory. (*note that I attributed it to you* Big Grins) I've been reading all of the links you posted. The science is still inconclusive on the link. But it is a really neat little theory that ties up a host of loose ends.

On the Outbreak theory; the number of individuals activated would be described by the number of generations. For instance Incline Village where there was a 10% population(that's really high!) activated and the individuals were very ill. That would argue for a 3rd or 4th generation build up of XMRV. A heavy viral load that was active in a significant portion of the population.

Or the Londonville kids where a significant number of children are triggered. Children would mean at least a 2nd generation since they are not sexually active. It's not until it becomes prevalent in the population that you get "groups" rather than individuals.

GWS especially arguers for a 4th or 5th generation build up. You are talking about taking a totally random population group, exposing them to a set of triggers and getting a 5% major illness rate.

Prevalence would be after the 3rd generation. We should be starting into the 6th generation at this point. The Incline village and Londonville Kids would be at least 3rd probably 4th generation IF XMRV has been in the population for 100 to 110 years. (sigh) Still got to wait for the science.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
*blushes* Thanks, George! Means a lot, coming from you. But you tied it in with the history & the DeFreitas question!

How 'bout:
The fresh_eyes-n-George endo/exo superduper double activated combo special!
Now with more retroviruses!
(retrovirii??)

Afraid I'm not totally comprehending your explanation about the generational prevalence thing - I'll give it another look when I'm fresher.

:eek:
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
Theory

George, not to blow holes in your theory but Tahoe was a vacation destination. Lots of people who got sick were just visiting or had only lived there a relatively short period of time. Just don't think it would be the kind of population it could have built up in. Although you could make a case for your theory in Lyndonville.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
OK, George, questions on the outbreak stuff.

Are you modeling that on XMRV being *strictly* vertical (parent to child) transmission?

Wouldn't bakerscape's point indicate some horizontal transmission as well?

Where did you get the 10% Incline Village #?
 

Eric Johnson from I&I

Senior Member
Messages
337
If you dont think CFS is ancient, try looking at this 19th C. book on neurasthenia by G Beard, the first physician to declare it a distinct syndrome in 1850-something or so.

http://books.google.com/books?id=Gw...r+nervous+exhaustion&lr=#v=onepage&q=&f=false

I'm not saying you will be absolutely convinced neurasthenia is the same thing. But it might very well be. I would bet at 3:1 that it is CFS.

Of course this book has a ton of nonsense in it. Beard did not have it in mind to "not believe everything you think." But we may hope he had some limited reliability in simple observation.

Unfortunately I have had a hard time figuring out just where Galen (who is far more ancient) supposedly describes fibromyalgia.

One patient observed by Beard could have had lupus or MS (indeed, this is probably the case). But he saw many patients for long periods. Most MS patients would have seen paralysis by then, and most systemic lupus patients used to just die after not too many years, after showing very obvious rashes.

I know less about making sure that these people dont have hepatitis or some other infectious disease.

I didnt find exercise intolerance in the book, but in general most people did not exercise until, I believe the 1960s. In 1900 40% of americans were farmers (perhaps less in europe, perhaps not), and most of the rest had laboring jobs. So exercise as we know it was not really invented except in military training; those who played team sports for fun also exercised without intending to per se.
 

Lily

*Believe*
Messages
677
Interesting book....

I read a bit of the preface and will try for more tomorrow....definitely some similarities.......

thanks Eric!
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Baker's

Baker's, you took the words out of my mouth. Not only was it a vacation spot, but even those who lived there were first generation people. The saying in town was that the average age for Incline Village natives was 10.

So why would so many people who are from so many parts of the country coincidentally have this second / third generation virus end up in Incline Village?

Or maybe all over the nation / world there was second / third generation infected people and they all got sick in 1984 and 1985 from other viruses as a trigger? That would put the original infection in the first generation over forty years earlier since the average age was 38. Hmmmm.

Well, although I don't buy the theory, I do like the challenge and the speculation.

Tina
 
G

George

Guest
Hey Guys

Good Questions all around. Bear with me here, I just put my best girl (dog) down on Wednesday and I'm only about half here.

O.k. let's see. First there were 292 individuals who "came down" with CFS between 1984 and 1987 is that correct?

The town population was at the time 7400 or 7800 if I remember correctly. That would be 2% of the total population not 10% so I got that wrong right off the bat. So 2% of total population.

Then if I'm reading the PDF file those individuals were all town members which is why Peterson and Chaney tried to get the CDC to check water supply. The individuals did not all work in the same place.

I haven't been able to find any information on the cohort that breaks down age, or how long the family lived in the area. So theoretically they could have all been up for a ski vacation. However, the information and the fact that they were able to follow up the "77" patients who later developed Lymphoma led me to believe this was a pretty stable population group. Anyone willing to e Dr. Peterson and ask??

I do know that the town was established in the late 1890's (the Crystal Bay area) and that some of individuals who had homes there where from the Los Angeles area in the 1920's and 1930's (after the casino was built) That would establish a link between one outbreak area and a second outbreak area. LA in '34 and Incline Village in 1984. So it could be posited that there were both vertical transmission (from parent to child) as well as horizontal (from individual to individual via sexual transmission).

On another note I found a doctor who worked in the area (Crystal Bay) from 1970 to 80 who went on to become a CFS doctor somewhere else. (I can't remember off the top of my head sorry, I'll find the link and post it when I'm not so brain drained) Anyway Dr. Carthhat or something like that says that he realized later going over old records that he had been treating CFS patients since around 1978.

Thanks for all the good questions and please feel free to poke holes in it. If anyone wants to start a thread some where and work over the whole theory it would be cool with me. It's a bit of a time waster since the only truth is the science but it keeps the brain busy.