• 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.

XMRV 101 for Dummies

soulfeast

Senior Member
Messages
420
Location
Virginia, US
I just got results.. positive PCR. Serum pending.

Ive not followed the threads, info much because I really didnt think I had this but now that I know I do, it makes sense... esp with my family history.

So.. since I am starting from ground up a bit here.. can someone give be a primer on this retro mlv mix.. first it was xmrv and now its a possibly mix or grab bag of mlvs? Is xmrv as a retro viral entitiy still on the table as well?

Then to get really basic... what is the potential, probable, theorized role in cfs.. it downregulates the immune system once triggered? How? It directly causes the cytokine flares, specific ones identified on grfaph on another thread.. ??

Can we make a sticky of basic info for people like me coming in behind and needing to play catch up? Is there a basic article, info out there to refer to? Im getting infor futher down the trail and Im at the beginning. Also a bit of a learning curve and an inflammed brain at the moment.

Thank you!
 
Messages
96
Location
Chicago
As far as i now it's only XMRV which is a part of the MLV family virus but only XMRV infects humans the other MLV viruses don't, XMRV it's a virus that infects a cell and becomes part of your DNA which means you have it for life as other retroviruses XMRV attacks T cells which are natural virus killers which makes you have a compromised immune system giving other viruses and bacteria in your body the opportunity to re-activate and stay activated(this is why many people with CFS have high amounts of antobodies for other viruses like EBV,herpes and on) because your immune system is weak and can't fight back every person is different some can control it very well and some can't, some are born with it and develop autism as children some other get sick later on in life and i would think is because they have a weak immune system and as they grow older they pick up other virus and bacteria along the way which makes them get sick, just as with other retroviruses many people can have them for decades without having any symptoms, as for cytokine flares is not really the cytokines that make you sick, when you have a virus in your brain your cytokines activate to go and fight the virus which makes the brain swell, which causes brain lesions and cause brain demyelination because the virus is infecting the myelin trying to get to the brain cells, what cause the flares is the virus infecting more cells "moving around if you will" and this is when the cytokines fight the virus...
 

Jemal

Senior Member
Messages
1,031
I think they are testing for MLV's because the Lo/Alter study didn't find XMRV per se, but MLV's that looked like it. So if you only looked for XMRV, you might miss some viruses that are alike.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Soulfeast, I highly recommend reading the XMRV Buzz page here on Phoenix Rising, and don't forget to go back and read the Buzz page archives. This is all quite long, but has lots of links to other info, and you can skim much of it.

XMRV is a real virus infecting humans. MLVs are only probably in humans. We still don't know for sure that either cause disease, but the evidence is mounting that these virus induce immune responses. They are also associated with Natural Killer Cell dysfunction, which are one of the first lines of immune defense in the body.

XMRV is associated in some studies with several cancers. This doesn't mean it causes them, but it is looking likely.

The rest you can get from the Buzz page. There are also a lot of threads on XMRV on this forum.

Even if XMRV is shown to be non-pathogenic (and this is unlikely), such high prevalence is then proof that our immune systems are defective.

We already know of several drugs, some of which are still experimental, that can treat XMRV - how effectively they work in real patients is still up for debate (there is no clinical study yet), but anecdotal patient reports suggest some of these drugs can be very effective if combined.

Bye,
Alex