Cheney on transmission

[abc123]

Today, this is on the "XMRV Buzz" page...

"Dr. Cheny (ahem Cheney's) Study - Dr. Cheney's study probably did little to answer any of the more pressing questions about XMRV because the tests were not done at an independent lab but it should prove quite valuable when the WPI's XMRV test is validated. Some of his stats were alarming. Dr. Cheney has said he probably sees a sicker population and judging from this sample he probably is; the average duration was almost 20 years! He found XMRV in almost 75% of them. Just as the Phoenix Rising Forums his patients had a very high incidence of CFS or CFS-like illnesses in their family (45%); 48% had cancer in their families or themselves and 28% had autoimmune diseases in the family. (One wonders what the norms are.) The most startling fact was 50% XMRV positivity in non-CFS family members. If Dr. Cheney is right this virus is spreading in families."

He apparently thinks it is more contagious than many other CFS doctors think it is. So how does he think it's "spreading in families"...? Saliva?

Does he have any transmission prevention recommendations?

 

[coxy]

Is there anyone on here who has access to email dr cheney and ask his opinion on how he thinks it's spreading through families?

This is what i'm most interested in having 2 children out of 4 with me/cfs from a very young age (age 8yrs), then myself getting me/cfs AFTER them at age 41yrs. Our youngest is now showing symptoms (only 6yrs). So i'm very keen to find out if it's spreading in a more basic way amongst us, i.e coughing, sharing cups etc.

 

[abc123]

up.........

 

[WestOzGirl]

Didn't Dr Cheney say a better retroviral model for XMRV was FeLV? In that case it can be vertically transmitted, sexually transmitted, transmitted through breast milk and through nasal and oral secretions. From my own observations I believe that the retrovirus cycles through stages of contagiousness. For example, when I was going through a crash episode I had a sinus infection like I've never experienced before and during this time I managed to push myself to work. Where I work our office space in small and lacks good ventilation and due to my sinus infection I was sneezing and coughing all over the place. Within several days a few people in my office became sick and to this day haven't properly recovered, one lady is much worse :-( I feel bad but I didn't know it could be this contagious. I'm very careful now, especially so when I have these strange sinus infections.

Could this be the reason why the authorities aren't announcing anything publicly? They want to make sure the science is sound to minimise any panic. That being said they are delaying the inevitable and in the meantime more people are becoming infected including their own families'. If this is the case this approach does not make any sense to me.

 

[Daffodil]

God what a nightmare.

west..i do think this is exactly why the govt is not letting anyone report this yet...at least not on tv, etc...this is going to be unbelievable huge and change the world as we know it.

this is just too surreal.

if this virus is going to be THIS widespread - and will continue to spread until they have a vaccine, which could take yrs - they have to come up with something better than antiretroviral cocktails for such a large portion of the planet. they cannot even keep up with a 3rd of the HIV need.

 

[WestOzGirl]

I don't want to sound like I'm catastrophising here but the longer Scientist's argue over who found it and who didn't this virus is spreading. SERIOUSLY!!! If the consensus is this human gammaretrovirus behaves like FeLV behaves in cats then it is transmitted casually. Take a look at the article about FeLV on Wikipedia. It makes sense that HGRV is transmitted and infects this way. Otherwise hoards more of the population would be sick.
Having our heads in the sand is not going to make the issue disappear. As well as "ACTING-UP" we need a sensible approach with scientific and medical facts. This is going to involve waiting a little longer as research doesn't happen instantly.

 

[ukxmrv]

WestOZGirl,

The problem is not that research is slow. The problem is that we have learned from the original Defreitas/Martin/Holmes time and realise that the Science may be deliberately delayed. That is why some patients are considering the ACTUP approach.

Having lived through the earlier Retroviral discoveries we know that we cannot trust Govt agencies to investigate this in a timely and thorough and fair manner.

Did you see the CFSAC meeting yesterday?

XMRV+

 

[anciendaze]

The question of transmission goes back at least to Grufferman's study of the North Carolina Symphony cluster. He found that the longer and closer the contact, the higher the risk of infection. There is no sharp boundary between sexual contact and less intimate contact, as in AIDS. There does seem to be an increased risk for those who consistently eat together. This fits clinical experience in which infected parotid glands are common in the early years of infection, which would make transmission via saliva natural.

Incidentally, the point where mainstream medicine decided Grufferman had gone over the edge was his poster presentation at a conference in Rome showing the incidence of cancer in this group was 17 times the expected rate. Of course, if you don't believe there is an infectious disease, the only thing tying these cases together is cancer, and not even the same type. He was accused of scaremongering by creating a cluster where none existed. I don't think he was able to publish in mainstream journals.

Part of the current internal crisis in medicine is trying to find a test for the infection which does not validate such an alarming assertion.

 

[JAXintheCity]

This is a seriously scary thought -- one I can't even think about. I work with children, and my biggest fear is passing it on to them.

That being said, after I got sick...my sister got sick with CFS...and my roommate of two years (and best friend) from University also came down with a CFS-like illness but was never formally diagnosed since she lives abroad in a country (Kuwait) that does not really validate ME/CFS. In addition, my ex-boyfriend of five years developed testicular cancer.

It is possible that I shared a razor blade, or earrings, or whatever with my roommate and sister ... and that it was transmitted via blood. Who would have ever thought? I feel bad about it now, too. I also worry about my now husband...

What would they do if they found out this is transmissable in saliva? Quarantine us? Not let us work? Scary stuff...

I am still waiting for XMRV results.

 

[Jemal]

A german study found XMRV in the respiratory tract. This could indeed mean the virus can be spread by saliva. However, it doesn't seem to spread easily as the virus would then be found in a much higher percentage of healthy people. The Ebstein-Barr virus for example can be found in 90%+ of adults, while XMRV so far has been found in 3 - 6% of healthy control groups.

XMRV has also been compared to the FelV virus in cats. 70% of cats are eventually able to resist or control the infection (40% are able to totally extinguish the virus). So it could also be that XMRV can be defeated by the immune system.

 

[Mark]

One thing I notice from this is that Cheney's 50% infection rate in family members is in accordance with Dr Mikovits' study finding high rates of infection of family members. This possibility of 'casual' transmission is growing in my mind at least; transmission through sweat in particular sounds quite likely to me, and I'm fairly sure I have at least one example from my own life. I suspect we are only infectious for limited periods, and people are only receptive to infection when their immune systems are weakened, so special caution seems appropriate at these times. Separate towels, ideally separate cleaning facilities, washing clothes separately, etc would seem to me like a few precautions worth taking if possible.

To throw in a positive note: if casual transmission is indeed true, then it's clear from factors like rate of infection in healthy controls, the wide variability of symptom responses, the observation that some people go into remission for long periods, and the finding that some individuals produce antibodies while others don't...all these factors together suggest that this infection is something that the body is, in general, capable of fighting. This ia actually a really positive thing for everybody. I think if you consider all this evidence, it suggests that once the disease progression is understood, there will be lots that can be done to provide relief. We can learn from those people who can resist infection better, find out how they do that, and translate that into drug treatments.

I think these implications of more widespread infection are both good and bad news then. I think the reality is that this infection is going to be something that everybody is going to be forced to live with, somehow. We are all going to be forced to figure out ways to fight it off; stopping its spread is not going to be an option. And there are going to be ways to improve the situation. Once we get the breakthrough of understanding and accepting the infection itself, things can move very quickly and suddenly for us in terms of therapy. We will effectively be going from a standing start, so the first leap in treatment from that incredibly low base could be quite dramatic...once we have got the ball rolling...

 

[firefly]

The question of transmission goes back at least to Grufferman's study of the North Carolina Symphony cluster. He found that the longer and closer the contact, the higher the risk of infection. There is no sharp boundary between sexual contact and less intimate contact, as in AIDS. There does seem to be an increased risk for those who consistently eat together. This fits clinical experience in which infected parotid glands are common in the early years of infection, which would make transmission via saliva natural.

Incidentally, the point where mainstream medicine decided Grufferman had gone over the edge was his poster presentation at a conference in Rome showing the incidence of cancer in this group was 17 times the expected rate. Of course, if you don't believe there is an infectious disease, the only thing tying these cases together is cancer, and not even the same type. He was accused of scaremongering by creating a cluster where none existed. I don't think he was able to publish in mainstream journals.

Part of the current internal crisis in medicine is trying to find a test for the infection which does not validate such an alarming assertion.

Anciendaze, curious as to where you are getting this information? (Especially about proximity and length of contact.) It does not seem to match Grufferman's published acccout. See http://www.ncf-net.org/library/cluster4.html

 

[firefly]

Never mind. I think I found the source of your data.

http://www.ncf-net.org/library/clusters1.html

 

[firefly]

Both of these studies by Grufferman are interesting. Unfortunately, they don't seem to talk about whether onset was sudden or gradual, and don't do a great job defining the symptoms involved. Odd too that he found similar NK cell actiivity in both the symptomatic and the asymptomatic. Unfortunately, as he points out, there was no control group outside the orchestra. If the entire orchestra had in fact been infected by a pathogen, then the analysis of contacts between C and NC versus C and C would be entirely irrelevant, because in fact they had all been infected, but only some were symptomatic. If it was only the symptomatic that were infected, we still don't really know what they were infected with: a common flu bug that triggered CFS, or THE pathogen underlying CFS.

So, it's not clear to me this study really shed much light on how "CFS" is transmitted, let alone XMRV.

Disclaimer: I'm so NOT a scientist! On logical puzzles, I do allright, but when it comes to chemistry and biology, well, that's a different matter. So, fire away, if you have a better interpretation of either of these Gruffereman studies.

 

[Daffodil]

jemal.....they used to think that a percentage of cats could extinguish the virus but recently, with more sensitive assays for provirus, they have learned that this is not the case. most cats exposed harbor provirus forever and it can re-activate.

 

[Mark]

I think it's probably true, for cats and for us, that once you have had some infection, there will always be at least a little bit left somewhere that can reactivate. You probably never get rid of anything 100%. But once we have a reliable way to help fight off the infection, we will always be able to get help to fight back.

Also, IF it is spread fairly casually, then it's pretty likely that nearly everybody has already been exposed and has at least some tiny amount of it infecting them. I think we tend to think about infection in simplistic, black and white terms, that you either have it or you don't. But in reality the numbers of cells in our body are so unimaginably huge, that it doesn't really work like that: instead, it's a numbers game. How much of it do we have at the moment, how much is replicating, how strong are our defences at the moment, are we winning or losing the battle at the moment - that sort of thing.

So you can think about all this in a positive or negative way (and it's best to try to focus on the positives as much as possible). IF it's casually spread, then most people have already been exposed, and we must have some kind of defences against it. If some people can recover partially, or if some of us have good days and bad days (most of us do I think) then there are always possibilities for managing things better. The more we know and understand all these things, the better our situation will get.

 

[free at last]

I think it's probably true, for cats and for us, that once you have had some infection, there will always be at least a little bit left somewhere that can reactivate. You probably never get rid of anything 100%. But once we have a reliable way to help fight off the infection, we will always be able to get help to fight back.

Also, IF it is spread fairly casually, then it's pretty likely that nearly everybody has already been exposed and has at least some tiny amount of it infecting them. I think we tend to think about infection in simplistic, black and white terms, that you either have it or you don't. But in reality the numbers of cells in our body are so unimaginably huge, that it doesn't really work like that: instead, it's a numbers game. How much of it do we have at the moment, how much is replicating, how strong are our defences at the moment, are we winning or losing the battle at the moment - that sort of thing.

As for transmission my wife never succomed one of my daughters had a lot of illness when younger, we thought ME may have been developing.but shes been fine as she got older now 16. I said it was complicted ?
So you can think about all this in a positive or negative way (and it's best to try to focus on the positives as much as possible). IF it's casually spread, then most people have already been exposed, and we must have some kind of defences against it. If some people can recover partially, or if some of us have good days and bad days (most of us do I think) then there are always possibilities for managing things better. The more we know and understand all these things, the better our situation will get.

Mark i think a lot of what you say may be correct as it certainly fits my experiance, though im waiting to hear if im positive or not, so untill i get that im unsure, but if t aint xmrv its def a virus and immune activation of somekind

This idea of the immune system coping with a virus does sound correct, as after sudden onset viral symptoms, and a gradual decline into a constant illness. It took a lot for me to partially recover. Sleep apparently repairs the immune system, and only after i got my sleep back on track did i take a long snakes and ladders type recovery.

3 steps foward and two back again. there are many things that can strengthen the immune system, and the right sort of foods are another thing that can make us stronger to fight infection, ( again thats something i did ) anxiety can really knock the immune system. again thats something i partly cured. Its not one thing, but lots of things combined that gradually over a long period of time mount up, to combat ME and PEM

Often i think im cured, then i start getting ill again, in small cycles, untill the next period of better health. If you guys could really know how ill i was, and for how long, if you could have seen it over and over. Then i feel a lot would really be analyzing what i did to get so many years now of better health. ( no bodys interested for the most part ) well thats fine. If you have what i have ( more had now, though it hasnt gone ) then i know your going to be suffering, i know your going to be scared. i know you will have thoughts of sucide. I know your life will be like a walking death. Ive had that life, but i came back. Only not completely, but enough to not feel terror any more.

Yes Mark i think your right, this is very complicated indeed, and my experiance suggests the body can over a long period of time ( possibly depending on what you do ) somehow learns to live a balance with a virus, that at first completley overwhelms the immune system.

If those changes are not made, then further decline can continue. though even with those life changes, it can be a very long snakes and ladders recovery. And i suspect its for the reasons your talking about, i think your on the right tracks, as it fits with my experiance and eventuall part profound recovery over 16 odd years of this damm illness.

I may be well for weeks, i may ger ill tonight. your right Mark it never fully goes. but it can get weaker, and it can lead to much faster longer lasting recoverys than when i was the walking dead, The terror of those memorys still and for always will haunt my mind.

when i die. I may well think of my screen name my kids, my wife, and FREE AT LAST it cant hurt us forever guys.

it has to be a virus in balance with our immune systems. when one has swine flu symptoms with a raging temperature then thats a virus. well i had those symptoms over and over, that lead to ME.
But then it becomes milder flu, BUT MORE OFTEN. But then milder still, and even less often. but only after years of slow careful immune system fighting back life changes
As for transmission, my wife never succomed
one of my daughters did get ill a lot when younger, and we thought she may have been developing ME. but as she got older she seems fine now. shes now 16
I said it was complicated indeed it is ?

 

[sickness]

As soon as the WPI found XMRV I realized that it had to be transmitted more easily than HIV. Otherwise you wouldn't get the outbreaks they've had. I think Cheney is probably right on this one. I feeling is that it is probably transmitted in the same way as Glandular fever (Mono), so that would include saliva. I think that nasal secretions would be likely as well.
WestOzGirl, sorry to here about the people at your work getting sick, that must feel awful. It is my worst fear that I have passed this on to others, especially my husband. I get quite paranoid whenever he is not feeling well.
take care, ness

p.s. I'm a West Oz girl too!

 

[Daffodil]

there will be a vaccine for this in the next few years i am sure, if not sooner. there is a vaccine for FeLV. i just hope that once there is a vaccine, they will continue to look for better treatments for us. sadly, once there is a vaccine, funding for treatment drops off.

 

[eric_s]

Sleep apparently repairs the immune system, and only after i got my sleep back on track did i take a long snakes and ladders type recovery

That's how it was in my case, too. Rest and especially sleep is the only thing i know that helps. But sleep only started to help me once i had gotten better to some degree.