• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Lack of Detection of XMRV in Seminal Plasma from HIV-1 Infected Men in The Netherland

E

Eric Johnson from I&I

Senior Member
Messages
337
Speaking of parasites -- that's another possible trigger or contributing factor -- a parasite infection -- that is often overlooked when treating CFS/ME. Thanks Eric! :)
Click to expand...

I agree, it's possible. I was using 'parasites' in the broad sense, though, which embraces everything which parasitizes. Unfortunately there are two very different senses.
 
E

Eric Johnson from I&I

Senior Member
Messages
337
Cort, hm now that I think about it I've heard that CFS isn't too common in spouses. Still, I've seen nothing formal.

Anyway CFS does run in families to an extent. It could be that some study has found a heritability of zero but what I have seen is more like 0.30.
 
M

Megan

Senior Member
Messages
233
Location
Australia
Another thought. It's clear that the WPI are working with the idea of cofactors as triggers for XMRV to turn into CFS. What if the order in which people get these viruses or other life events is important?

eg. I got CFS at age 37 after a bout of EBV. But my mother has fibromyalgia, father just died of prostate cancer, mums father died of prostate cancer and her youngest brother has just been diagnosed with it. Based on the current WPI hypothesis, if I had to guess, I'd say I was probably carrying XMRV all my life causing no harm until I got EBV.

But what about a scenario where someone has EBV as a child, is thus immune, then later contracts XMRV? Maybe they would be OK and could be a carrier with one less thing that can convet XMRV to CFS?
 
M

Megan

Senior Member
Messages
233
Location
Australia
Eric, I deleted my post as I thought it might not be a good idea to suggest such things when it is just speculation.
 
M

Megan

Senior Member
Messages
233
Location
Australia
I will repost the idea on the undestanding that it is just speculation.

The thought was if XMRV was spread through blood transfusion then mothers giving birth would be prime recipients of the virus and they then go on to breastfeed their children (perhaps when they are most infectious?). This could explain both sporadic occurrences and patterns within families. Because CFS might occur a long time after XMRV infection no one would ever pick it up as an epedemic. But the drawback I see to this idea is that we don't hear of heamopheliacs coming down with CFS. Also it doesn't really explain outbreaks either.

I only came to this thought after I found out how many of my friend have received a transfusion during chilbirth (quite a lot). On the weekend I found out from my own mother that she had one when I was born.
 
M

Megan

Senior Member
Messages
233
Location
Australia
lol!, I'll just leave mine now.

I guess I'm now thinking that the take home message from all this might be that working out the epidemiology of a virus like XMRV based on CFS symptoms would be almost impossible for mere mortals like us if the following things are true:
* that XMRV has cofectors as triggers to bring on illness
* there is delayed onset of many years after infection
* conversion from latent carrier to CFS symptoms is not inevitable (as with AIDS in most cases)
 
O

omerbasket

Senior Member
Messages
510
Sam Carter said:
An entire research group is either composed of i) liars or ii) incompetents -- this is not a persuasive argument.
Click to expand...
Perhaps not persuasive. But a fact.
They wrote:
The latter patients were from a local outbreak of CFS in Incline, Lake Tahoe, USA
Click to expand...
This is simply not true. So either they are competent but they decided to lie, or they are incompetent.
 
V99

V99

Senior Member
Messages
1,471
Location
UK
* conversion from latent carrier to CFS symptoms is not inevitable (as with AIDS in most cases)
Click to expand...

I realise you said if, so this is only about the idea. Simply we have no idea yet if those people with XMRV and no symptoms will develop disease. As for heamopheliacs , we don't hear about who does get CFS. Unless you count the CDC, and who does. They cannot tell us who gets the disease, because they either have not looked, or everyone can. There will be other options, but I'm saying that we don't know if heamopheliacs have been developing CFS or prostate cancer. Why would they look, when they don't take the disease seriously?
 
anciendaze

anciendaze

Senior Member
Messages
1,841
Is it my imagination, or is Prof. Racaniello losing patience with sloppy science on XMRV?

The idea of checking in some way that some subjects were infected with XMRV before checking semen seems pretty obvious. The treatment of samples prior to PCR simply doesn't make a whole lot of sense to me. Can anyone tell me what they might have been thinking?

The problem here is that there is a great deal of bad work out there to emulate. Researchers with limited budgets may simply choose to do what they can afford, if it is has been used in published papers. Bad science acts like Gresham's law for money.
 
V99

V99

Senior Member
Messages
1,471
Location
UK
He links the words "co-culturing them with LNCaP cells" to the Landesbioscience article from Mikovits and Ruscetti!!!
 
V99

V99

Senior Member
Messages
1,471
Location
UK
It is great to finally start to see people backing the WPI method. Obviously this study is very unlikely to make a dent in the ME/CFS research, but its nice to see the change.
 
S

Sam Carter

Guest
Messages
435
S

Sam Carter

Guest
Messages
435
Otis said:
I'm pretty darn sure after reading his posts.
Click to expand...

Thanks, Otis. I searched PR and found that knackered had been in email correspondence with madmax and was satisfied that he was Max Pfost. I'm still concerned tho' that the paper has not been removed from the website to allow the WPI to amend it. I would guess this results from the WPI team being overworked and understaffed.

ETA: Otis, I note your updated avatar and conclude you have very fine taste in music.
 
Otis

Otis

Señor Mumbler
Messages
1,117
Location
USA
V99 said:
He links the words "co-culturing them with LNCaP cells" to the Landesbioscience article from Mikovits and Ruscetti!!!
Click to expand...

I'm guessing that the fact that Dr. Signh mentioned it on the podcast last week didn't hurt. She's a smart one. Use the best methods out there along with your own.
 
ixchelkali

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
From Vincent Racaniello's blog:
To determine if XMRV could be transmitted in semen, I would obtain semen samples from patients known to be infected with the virus. Then I would co-culture total semen and seminal plasma with LNCaP cells to amplify any virus present, followed by PCR to detect either virions or proviral DNA. I realize it may be difficult to conduct the study in this way, but I don’t see the value of doing it any other way.
Click to expand...

Yes! I wish they would quit wasting resources on meaningless studies.

I think I'm becoming a Vincent Racaniello groupie. His TWIV podcasts are giving me a quick course in virology 101. A lot of it doesn't make it through the brain fog, but enough does that I'm understanding the studies I read better. And I find it soothing to listen to.
 
You must log in or register to reply here.