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

XMRV cure

Tia

Senior Member
Messages
247
Hey guys!

I was just wondering.. From what I've understood they're working on a cure for xmrv right now, that cancermedication that Mikovitz talked about they're translating now to a medication for xmrv. But i just heard that they meant they can TREAT the virus and not CURE it.. is that really so? And that we have to take medications for it for the rest of our lives..? :confused:
 

redo

Senior Member
Messages
874
Hi,

I'd love to hear more about that. Which cancer medication are we talking about?
 

redo

Senior Member
Messages
874
Hey. Why the blah? I too hope that it's something new, so we have more options. But if she thinks Rituximab is working, then that's also good news.
 

Daffodil

Senior Member
Messages
5,875
lol i just hate the idea of killing off my B cells....and wouldnt we have to take it intermittently forever? also....i will never get it here in canada. its IV. it will take decades for them to OK it for CFS here, if they ever do..let alone the UK!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
HI everyone

I don't think anyone is working on a cure for XMRV, only treatments. We are way too early in our understanding for them to be talking about cures, just treatments for life. On the other hand, many groups seem to be working on a cure for HIV: any such cure, should it work, could be translatable to XMRV. The time-frame for this is probably ten to twenty years (or more), as first it has to be proven for HIV, then translated to XMRV, then shown to cure XMRV: not a simple one-two step.

Bye
Alex
 

Daffodil

Senior Member
Messages
5,875
alex..not sure if it could be that easily translated to XMRV...XMRV might infect a lot more types of cells cuz it uses another receptor

also..XPR1 receptor is more important for other functions so we cant just block it like they can for CCR5
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
HI Daffodil

One of the HIV strategies is to cut the HIV from the DNA. Another is to damage it so severely that it becomes nonsense DNA. It is not important what type of cell is affected with these strategies. Only if we want to try to kill every cell with the virus will we have a problem: if XMRV is as common in the body tissues as I suspect, particularly in long term patients, then killing every infected cell would have severe consequences. This might work for new patients, but for most of us this strategy would not work.

Blocking XPR1 is likely to be a problem, I agree, It is also not a cure, only a treatment.

Bye
Alex
alex..not sure if it could be that easily translated to XMRV...XMRV might infect a lot more types of cells cuz it uses another receptor

also..XPR1 receptor is more important for other functions so we cant just block it like they can for CCR5
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Right now, there is no retrovirus (or even virus for that matter) that can be cured completely.
 

Daffodil

Senior Member
Messages
5,875
hep C can be cured sometimes and there is some evidence that long term acyclovir might actually eradicate EBV from the body.
 

Tia

Senior Member
Messages
247
I can't hear it's being talked about in the video. Can you write the minute/second when it begins?

Yeah sorry, she said "treatments" not cure, I thought she/they meant cures. Damn, I've misunderstood everything, I was so hopeful. Looks like it's close to HIV then: something we have to live with all of our lives and the treatment will probably be longterm and harsch on our organs.. :/ But I'm happy for anything that works though.
 
C

Cloud

Guest
hep C can be cured sometimes and there is some evidence that long term acyclovir might actually eradicate EBV from the body.

I guess it depends on how you define "cure". Suppressing the virus into undetectable latency is possible, but eradication is unlikely. With treatment many are achieving SVR (sustained viral response), which means that due to treatment their immune system is now able to keep the virus at very low and undetectable levels, but it's there. The new protease inhibitors are looking good with 50-70% SVR. Personally, I would consider SVR "cured", especially since that's the most we can hope for with most virus' at this time.

It doesn't seem that chronic ME/CFS will be completely "cured" anyhow.....Maybe it's more likely to be a long term maintenance program of meds and lifestyle adjustment that will allow us a greater quality of life. I'm good with that.
 

mojoey

Senior Member
Messages
1,213
I think innovative approaches like monoclonal therapy for TSG101, chemo-based therapies, and catastrophe-error generating meds like KP-1461 may lead to eradication in theory, but in practice I doubt they will be commercially available now if ever. It just doesn't fit into the pharmaceutical industry's disease management paradigm. Nevertheless, all these therapies and more are being discussed in the "Eradicating HMRV" thread http://www.forums.aboutmecfs.org/showthread.php?7403-Eradicating-HMRV-(or-whatever-they-name-it-next)

Cloud--I would like to know where you read the 50-70% SVR response for protease inhibitors. Several physicians have highlighted to me (in private conversation) that the protease inhibitor is the missing piece. The issue is finding or creating one that works for MLVs. The fact that indinavir would work on MLV but not XMRV indicates XMRV may be a vastly different virus to treat, even if much of the genome is similar.
 

Daffodil

Senior Member
Messages
5,875
cloud..i didnt mean SVR...hep C can be eradicated if it is caught early and treated aggressively.

m0joey...wow...they actually told you that a PI is the missing piece? since we already have meds that prevents the virus from integrating but not from entering the cell, what does the virus do when it gets in the cell but cannot attach to the DNA? i am on the 3 meds, as you know.

sue
xoxo
 
C

Cloud

Guest
I think innovative approaches like monoclonal therapy for TSG101, chemo-based therapies, and catastrophe-error generating meds like KP-1461 may lead to eradication in theory, but in practice I doubt they will be commercially available now if ever. It just doesn't fit into the pharmaceutical industry's disease management paradigm. Nevertheless, all these therapies and more are being discussed in the "Eradicating HMRV" thread http://www.forums.aboutmecfs.org/showthread.php?7403-Eradicating-HMRV-(or-whatever-they-name-it-next)

Cloud--I would like to know where you read the 50-70% SVR response for protease inhibitors. Several physicians have highlighted to me (in private conversation) that the protease inhibitor is the missing piece. The issue is finding or creating one that works for MLVs. The fact that indinavir would work on MLV but not XMRV indicates XMRV may be a vastly different virus to treat, even if much of the genome is similar.

Hey Joey....I was referring to a phase 3 clinical trial for the treatment of Hep C. Vertex's new Protease Inhibitor (VX950) has shown 50-70% SVR in this study.