Article: The Singh XMRV Patent The Next Cancer for XMRV? Prostate Cancer Results Validated/Progress

Article: The Singh XMRV Patent The Next Cancer for XMRV? Prostate Cancer Results Va

You can view the page at http://www.forums.aboutmecfs.org/content.php?273-The-Singh-XMRV-Patent-The-Next-Cancer-for-XMRV-Prostate-Cancer-Results-Validated-Progress-on-CFS

 

CBS, can you remind us of when Dr Singh began her ME/CFS study with Dr Bateman, and do you have any idea on when approximately we might expect results? <o></o>

Hi Parvo,

The CFS patient and control blood samples were collected at the end of March. The most recent estimate of a publication time line for the CFS study was that Dr. Singh hoped to have it submitted by the end of the year. Dr. Singh has also stated that because of the potential impact of the findings, review is taking significantly longer than it typically would.

FWIW, Foley & Lardner LLP, the agent representing the University of Utah and Dr. Singh on this application, is a large firm with a great deal of experience representing IP clients in the biotech fields. The Univ. of Utah does not always use in-house counsel for patent applications but their going out of house and use of this particular firm signals that they see this as having significant potential (hopefully more so than "Cold Fusion" - ).

 

Hi Parvo, The CFS patient and control blood samples were collected at the end of March. The most recent estimate of a publication time line for the CFS study was that Dr. Singh hoped to have it submitted by the end of the year. Dr. Singh has also stated that because of the potential impact of the findings, review is taking significantly longer than it typically would.).

Awwww CBS, ya just gave me my Thanksgiving present.

And a Happy Thanksgiving right back atcha.

Parvo

 

(hopefully more so than "Cold Fusion" - ).

Yeah, this better be light years ahead of cold fusion or we are in big trouble!!

 

I don't agree at all. I know I've repeated this 1,000 times but I'll do it again: Remember polio. Just about everyone got exposed: only 10% got sick, with a fever and illness that then went away: only 1% got paralyzed, and the paralysis was due to a more or less random event of the virus getting into the nervous system. There is NO virus that makes everyone who gets exposed sick or even infected, and not everyone gets sick in the same way - for reasons of genetics, other factors, or even just chance events. There would be nothing startling and new about XMRV if it behaved the same way.

Thanks for setting me straight on that point UT, and sorry for obliging you to make the point about polio for the 1001st time.

I stand corrected and I think you're right but I also think that an awful lot of people are going to see it - and argue it - the same way that I did, in that scenario. Maybe one of the next big long-running arguments is going to be just that point. I've had the same sort of puzzled query from a few people I've talked to about XMRV: "but if XMRV causes ME then how come the infected healthy controls don't have ME?". Or, more often, "but XMRV can't be the cause of ME because...". Also confusion or disbelief over the idea that the same virus might affect different people differently, or be implicated in various different illnesses. Stupidly enough, I've been really irritated by the weak logic of those sort of comments, and now I've gone and done basically the same thing myself. (doh!) Anyway you've got me thinking ahead now, so I'm already bracing myself for the stage after WPI findings are confrmed...with a whole load of really helpful cautions that causality still isn't proven, it could still be a passenger, and so on and so on...

Also your theory that our illness could be the consequence of us keeping XMRV at bay chimes strongly with me. I've had plenty of similar thoughts along those lines over the years. So...if the rest of the world suddenly becomes interested in us when they find out our blood might be useful to them...do we just hand it over? Hmm...but the UK authorities have told me I mustn't give blood for my own protection....tricky one...

 

Dr. Singh has also stated that because of the potential impact of the findings, review is taking significantly longer than it typically would.

I seem to remember a quote that the testing was complete, she was now unblinding, and it was looking a bit more complicated than she expected so it might take a little more time...did I remember that right, and is this a subsequent comment implying that it's now in peer review?

 

I seem to remember a quote that the testing was complete, she was now unblinding, and it was looking a bit more complicated than she expected so it might take a little more time...did I remember that right, and is this a subsequent comment implying that it's now in peer review?

I suspect that if the study has not been submitted, the focus is on the manuscript (keeping in mind that there appear to be many studies underway simultaneously). Review and revisions would be a real wild card.

 

Well, sheit. I have been careful to not kiss my kids on the mouth. Yet, my sons have married into families that lips kissing is done
regularly. I don't like the looks of what this could lead to. I sent my text off last week. The results will tell a tale.

Thanks guys for all the good input.

 

Shit, so it really is in our bodilyfluids? I really didn't think so, since I thought it to be like HIV and therefor only in our blood. But I'll be damned. This means we can't have unprotected sex, share towels, eating utensils or a glass with anyone, right? Shit..there's a lot to think about in this. :mask:

Hi Tia, Tomorrow I go to a friend's 40th birthday dinner. I will have to eat pizza, as I don't want to eat anything requiring utensils, and I will be drinking bottled water. I have also not had anyone cut my hair for over a year - my hair is short so doesn't look much like its been hacked at with scissors using a mirror, but if I wanted it longer it sure would. Maybe I'm taking too many precautions, but I figure that its better to be sure now and we can relax if better science gives us the all clear.

Bye
Alex

 

Also your theory that our illness could be the consequence of us keeping XMRV at bay chimes strongly with me. I've had plenty of similar thoughts along those lines over the years. So...if the rest of the world suddenly becomes interested in us when they find out our blood might be useful to them...do we just hand it over? Hmm...but the UK authorities have told me I mustn't give blood for my own protection....tricky one...

Hi Mark and urbantravels, I have been proposing for years that truncated RNase L was an emergency antiviral response, that something was switching it on, and that CFS might be due to our massive antiviral effort. All this info makes me think this even more, with XMRV being the trigger. I said yesterday (on a private research forum) that I think we are sick because we are fighting XMRV and we stay sick because we can't beat XMRV. Now I would like to add that CFS remission might be linked to XMRV suppression. This is thanks to Cort's WPI letter on another thread. So I am in tentative agreement with your comments urbantravels and Mark, they make total sense to me.

One question I would like researchers to answer though: are we better off in survival terms with or without CFS? Could CFS be considered a survival mechanism gone awry?

Bye
Alex

 

Dr. Singh has also stated that because of the potential impact of the findings, review is taking significantly longer than it typically would.

To me this is a good sign. It means that the disease impact of XMRV is being taken much more seriously than previously.

 

Shit, so it really is in our bodilyfluids? I really didn't think so, since I thought it to be like HIV and therefor only in our blood. But I'll be damned. This means we can't have unprotected sex, share towels, eating utensils or a glass with anyone, right? Shit..there's a lot to think about in this. :mask:

Well, i'm not sure, but with somebody who also has it, would the same apply? I mean all that could happen is that you or the other person is exposed to some more viruses. No idea what a doctor would tell you about this.

As far as HIV is concerned, to my knowledge sharing towels or a glass would not be dangerous, but please ask somebody who really knows before believing me!
And also i think HIV is not only in the blood but also in other fluids and probably more or less everywhere. Just not in a big enough concentration to infect another person plus it can't tolerate air very well, if i remember correctly.

 

Hi Tia, Tomorrow I go to a friend's 40th birthday dinner. I will have to eat pizza, as I don't want to eat anything requiring utensils, and I will be drinking bottled water. I have also not had anyone cut my hair for over a year - my hair is short so doesn't look much like its been hacked at with scissors using a mirror, but if I wanted it longer it sure would. Maybe I'm taking too many precautions, but I figure that its better to be sure now and we can relax if better science gives us the all clear.

Bye
Alex

Wow! Is this really necessary? I think you know a lot more than i do about those things, but if there was a risk for you to infect other people through utensils or a glass you've used or through something similar, wouldn't you have to stay at home and avoid all contact whatsoever?

 

And also i think HIV is not only in the blood but also in other fluids and probably more or less everywhere. Just not in a big enough concentration to infect another person plus it can't tolerate air very well, if i remember correctly.

At one of the early talks last year, they said that HIV, although present in other body flluids, is unstable so doesn't survive out of the body very well. XMRV on the other hand is considered a stable retrovirus.

 

Wow! Is this really necessary? I think you know a lot more than i do about those things, but if there was a risk for you to infect other people through utensils or a glass you've used or through something similar, wouldn't you have to stay at home and avoid all contact whatsoever?

Hi eric_S,

XMRV is not HIV. It is supposedly more stable, so persists longer. I am just taking precautions, we need more science to be sure of anything. Haircuts in particular can occasionally cause scalp bleeding, although usually in small amounts, due to accidental nicks with scissors.

XMRV is probably in very low numbers in all fluids, and so the risk is small. It is not like influenza, or all family members of those with XMRV would definitely have it, instead of only up to half. My decision is personal, due to how I feel about risking others. We don't know enough yet to avoid contact like you suggested as a consequence of my prior email, I doubt it will ever get to the point of requiring extreme precautions. Should it get to that point, we would be in virtual (or literal) quarantine, so we will need substantial societal help. That eventuality would make it much more of an economic imperative to cure us, and push research like crazy, so even something that bad would have a silver lining.

The way I see it, we are not the main risk to the public. We self-limit our contact due to illness. Those who carry the virus and don't have CFS may be a much greater risk, as they live normal lives and don't know they pose any risk at all - and there are so many of them, probably more than 7% of the healthy population. They also still give blood and donate organs. However it is also possible that only in CFS patients is there any real viral load, so we might be more of a problem than I think. We just don't know yet. The other possibility is that our immune response keeps the virus in check, and we might be a problem only during major relapses. If this is the case then extreme precautions may be warranted only during major relapses, such as if we get influenza.

Personally I would far prefer that it could be shown that XMRV is benign and we can ignore it, and that CFS is just a whacked-out immune response. I doubt that is the case though - CFS might be our immune systems cranking up, but XMRV is probably immuno-suppressive and neurotoxic.

So, the choice to go as far as I am in avoiding risk is a personal one, and one I review regularly based on the latest science.

Also I would like to point out that if XMRV can induce a crazy antiviral response, then other viruses may be able to fill the same role, particularly other retroviruses. Its only been four years since the research community knew about XMRV, how many more retroviruses might be lurking? CFS patients who are eventually proven to be XMRV- should be tested in research trials to look for reverse transcriptase, a sign of retroviral infection.

Bye,
Alex

 

Just find all these findings an enormous step forward. If it is a "Whacked out" Immune System what causes that in the first place ? one wonders and why relapses.

 

My first reaction was cancer, wow, that means im more prone to getting cancer, but at least this will get alot (like 1000 times) more funding and research now.

THEN i spoke to my dad about it and he made some good points, which left me feeling alot better about this, and i dont think he was just saying it to make me feel better.

He pointed out that if having XMRV meant that you were more likely to get cancer then the cancer specialists would have spotted this along time ago, even if they didnt know that XMRV was the reason. They would be like, "Thats the 6th cancer patient ive seen this week who has ME/CFS - thats odd."
But that hasnt happened.

Im not sure exactly what that means. Perhaps XMRV doesnt cause cancer and/or ME/CFS. Though i do think it causes ME/CFS personally.
Perhaps its a side effect that this virus appears in one or both conditions.
Perhaps a portion of people who get infected with XMRV get ME/CFS and the others get cancer. I guess that would make us 'lucky' to have ME/CFS.

To sumarise how i feel now. I would say this is good news because it will get more attention. Even if they only focused on cancer, in finding out how to stop XMRV in cancer patients the side effect would be that the same treatment could be applied to us, and if XMRV was the cause then we would presumably get better.
So, this is good news. Thanks to Cort and the other guy who made it available!

 

I think it's strange that CFS could be caused by a cancer virus, yet the link between CFS and cancer seems rather weak.

Maybe CFS people alter their lifestyle (smoking, drinking, good diet) in a way which reduces risk of cancer? But aren't low activity levels linked to caner too?

I'm really not well read on the subject, and I know there is meant to be some link between CFS and cancer - but it's not as stark or well recorded as you'd expect if there was a clear link between CFS, XMRV and cancer.

 

I think it's strange that CFS could be caused by a cancer virus, yet the link between CFS and cancer seems rather weak.

Maybe CFS people alter their lifestyle (smoking, drinking, good diet) in a way which reduces risk of cancer? But aren't low activity levels linked to caner too?

I'm really not well read on the subject, and I know there is meant to be some link between CFS and cancer - but it's not as stark or well recorded as you'd expect if there was a clear link between CFS, XMRV and cancer.

my non-scientific theory is that somehow the me/cfs prevents the cancer and those w/xmrv who do not get me/cfs may be the ones to get cancer instead. cheney believes the disease is protecting us from something but has not unlocked all the answers.

so we may need to be very careful abt how we medically treat the xmrv...if we dampen our me/cfs symptoms, but somehow allow the xmrv to then start doing a cancer dance we'll be in big trouble.

 

On the XMRV<->cancer connection, I'd like to mention that recent research has shown prostate cancer, and possibly other types, may take a much longer time to develop than previously assumed. The time scale is measured in decades. This makes research connecting cause and effect much more difficult. The events converting infection to cancer are typically very rare events even in cases where the connection is understood.

A second point is that unexplained fatigue is very common as a precursor to diagnosis of many kinds of cancer. A presumption that CFS is psychological would explain a lack of reported correlation by oncologists. If the illness resulted in cancer, the diagnosis of chronic fatigue syndrome must have been wrong -- in common medical thinking.

 

I am going with this model that alex has sketched: I think you're pretty much spot on alex, this model chimes very well with a whole load of...let's call them 'intuitions'...that I've had about all this for some years now.

Hi Mark and urbantravels, I have been proposing for years that truncated RNase L was an emergency antiviral response, that something was switching it on, and that CFS might be due to our massive antiviral effort. All this info makes me think this even more, with XMRV being the trigger. I said yesterday (on a private research forum) that I think we are sick because we are fighting XMRV and we stay sick because we can't beat XMRV. Now I would like to add that CFS remission might be linked to XMRV suppression. This is thanks to Cort's WPI letter on another thread. So I am in tentative agreement with your comments urbantravels and Mark, they make total sense to me.

One question I would like researchers to answer though: are we better off in survival terms with or without CFS? Could CFS be considered a survival mechanism gone awry?

Bye
Alex

To sum it up as I see it: the class of conditions including ME/CFS are suspected of being "autoimmune" disorders. They are, perhaps, "autoimmune" because actually some pathogen has invaded the body and 'got behind the defences', it's become part of the body and is now replicating, prompting an immune response. Thus "autoimmune" as a term is in a way a half-truth, because the body is trying to attack itself in a way, but really the part of itself it's trying to attack is the infiltrator, XMRV. In this confused state, the body ends up also attacking parts of itself as 'collateral damage'.

Further evidence for this whole model comes from the findings posted today about how cannabis switches off a particular part of the immune system. Put this together with the fact that in many of these rather mysterious conditions, patients report that the only effective pain relief comes from cannabis. If patients get pain relief because cannabis is switching off their immune system response, then that suggests that the pain was due to the immune response in the first place.

So our bodies are caught between a rock and a hard place, in a sense. Continually fight off the long-term effects of the pathogen (XMRV), and we stave off cancer but experience all the pain of the fight. Stop fighting the pathogen in the process of reducing ME symptoms and we deal with ME/CFS but allow the cancer to slowly develop.

The problem is that once XMRV has infected and taken hold, it is in a sense "part of us" now. We can fight off its virions as they replicate, which we are constantly doing - causing the symptoms we experience - but the immune system can't get to the root of the problem and deal with the XMRV-factories themselves - the bits which are now part of us, written into the DNA of infected cells.

Since we don't focus on it ever so much I'll just mention that factors that can provoke the XMRV-factories in is to start replicating include cortisol (stress), our body's anti-inflammatories, and hormones. I'm convinced the hormone factor explains why it's so much harder for women to fight off XMRV, because fluctuating hormone levels are going to be a regular factor that keeps bringing the root problem back into play, no matter how well your body has been coping.

To get a bit philosophical about it, the whole thing sounds like a bit of a metaphor of the dilemma of life in general: life is pain and suffering (samsara): the struggle to be, to continue to exist, is hard and painful. Give up, and let go of that painful struggle, and you die...

Crude Summary:
Cancer=Death
ME/CFS=The Fight For Survival
XMRV=One of the Main Enemies

Where we go from there, with that knowledge, I don't know, but the obvious thing to aim to do would be to identify the XMRV-infected cells in us and remove or destroy them.

Another strand of all this: regarding initial infection. I'm thinking now in terms of XMRV being moderately infectious and widespread, but being something that normally all our bodies would hope to be able to deal with. If we have our "eye off the ball" though, and our immune defences are down or over-stressed (due to things like severe viral infection, smoking cannabis, or severe stress) then XMRV can slip through the net: once it has done so, and infected us, then when our defences are back up our bodies can fight the replicating XMRV as normal (the constant immune activation that is ME/CFS), but they can't fight the source because it's now part of the body.

Loads more thoughts firing off from all of this now...like: how many of those whose ME did not start with acute viral infection (lowering immune response) were smoking cannabis around the time of onset? Of course that info is going to be a massive missing piece of the informational jigsaw, a piece of data that is going to be hidden or unreliable because most people won't want to admit to that because of the illegality.

One last note: putting this whole theory together with a number of connections in my own life to people who I know with ME and other ideopathic conditions who I suspect I may have been infected by, or who I may have infected, the whole thing pretty much fits like a glove. In each case of suspected transmission in my own life, the person who maybe got infected was either smoking cannabis or sick with flu at the time, and the person who maybe infected them was in particularly bad pain and thus likely to be more infectious. All fits really neatly.

Signing out now, but I bet I'll be thinking about all this for the next few hours...fascinating stuff...