Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

[Rrrr]

Does anyone find it a bit odd, his advice on infectivity?

I don't really think there is sufficient evidence on transmission and infectivity. Based on the monkey study, they observed that it does go quickly to tissues and glands. Therefore, it stands to reason that infectivity from sexual activity could last well beyond six weeks.

Also, if it could only be found in the blood of patients within six weeks of infectivity then:

* is it pure coincidence that those tested, but have been sick for years, happened to somehow become infected with this new retrovirus in a 6 week window of testing... what would the odds be on that I wonder?

If so, it would also make it a pure coincidence that MLV found by Lo Alter et al from blood samples that were 15 yrs old, identified in only 8 individuals ( if my memory serves me) must have all got exposed 15 yrs ago within a six week window. That's pretty amazing odds in such a small group, isn't it?

However if I recall, when they redrew fresh blood from these 8 subjects they also tested positive. That would suggest that the virus is not only in the blood for 6 weeks wouldnt it? It is also consistent with what is known of other retroviruses like HIV, that go to tissues and develop latent reseviours, that are capable of viremia dumps and therefore subsequent circulation in the blood.

In view of that, I would say that risk of infectivity remains but is increased, at times of notable symptom increase or crashes.

i am no scientist, but i thought that when they do a real study, like the ones you talk about above, they use a process that makes hard to find viruses easier to see. so even if the viral load is very small, they can still find the virus.

and i think bell was saying that the viral load is high for the first 6 weeks, and thus easy to infect another person. after those 6 weeks, the virus hides in other places in the body, but not the blood. so viral load in the blood is low. thus it is harder to transmit.

but if the virus hides in the cervix and cervical fluid (as the money study found), it seems that sexual transmission would be easy. (however, it is hard for a woman's cervical fluid to give a man HIV -- and maybe xmrv? -- unless there is an open cut on his penis, i think, allowing the virus to get into his blood. correct me if i'm wrong.)

 

[insearchof]

i am no scientist, but i thought that when they do a real study, like the ones you talk about above, they use a process that makes hard to find viruses easier to see. so even if the viral load is very small, they can still find the virus.

and i think bell was saying that the viral load is high for the first 6 weeks, and thus easy to infect another person. after those 6 weeks, the virus hides in other places in the body, but not the blood. so viral load in the blood is low. thus it is harder to transmit.

but if the virus hides in the cervix and cervical fluid (as the money study found), it seems that sexual transmission would be easy. (however, it is hard for a woman's cervical fluid to give a man HIV -- and maybe xmrv? -- unless there is an open cut on his penis, i think, allowing the virus to get into his blood. correct me if i'm wrong.)

hi RRrr


What you say, seems logical but why would n't activation of latent reservoirs of XMRV by hormones etc, cause a significant dump of virema in the blood...after all this appears to be an issue in management of HIV (even though XMRV is a slow replicating virus..which might also lessen risk of transition generally compared to HIV).

I agree with your observation on risks associated with cervical fluid. Also of interest is that a protein in semen is thought to increase infectivity of XMRV 100 fold.

In short, risk of transmission is yet to be really studied, so I found Dr Bells advice a little premature?

 

[Rrrr]

hi RRrr


What you say, seems logical but why would n't activation of latent reservoirs of XMRV by hormones etc, cause a significant dump of virema in the blood...after all this appears to be an issue in management of HIV (even though XMRV is a slow replicating virus..which might also lessen risk of transition generally compared to HIV).

I agree with your observation on risks associated with cervical fluid. Also of interest is that a protein in semen is thought to increase infectivity of XMRV 100 fold.

In short, risk of transmission is yet to be really studied, so I found Dr Bells advice a little premature?

i had not heard that before about the protein in semen increasing infectivity of xmrv. interesting. can you tell me where you saw that fact? i'm curious about that in part because if i (xmrv+ female) manage to get my own xmrv viral load down (with ARV or GcMAF or anything), can my healthy male partner, who, for all we know has xmrv from being with me (unknown, as he has not gotten tested), can his semen re-infect me?

i think that since this is such early days in the xmrv research world, bell does not know for sure about infectivity. but i think he has studied/tracked a single sick population for 25 yrs. so he has had a chance to watch if people's partners have gotten ill from being with them over the last few decades. and my sense of things is that his lack of urgency suggests that he has not seen many mates of sickies get sick themselves.

on the other hand, i think WPI and cheney are finding different results than that, right?

i did see that bell will be talking about the same topic that he talked about in Boston at the UK's "Invest in ME" conference in May.

 

[Rrrr]

GG

GG,

your private message folder is full so i can't PM you... trying but it won't let me.

rrrrr

 

[insearchof]

hi RRrr

re semen and infectivity, I can't quite recall....will check a few sources and see if I can locate this again. It stuck with me because I thought that was the kind of thing we might expect to see as an up coming research study and it made me think...that perhaps this rendered XMRV a much greater transmission risk in so far as sexual activity was concerned, than via other channels and would mean risk of transmission continues beyond the 6 six week window Dr Bell speaks of.

firstly, I think there will need to be quite significant studies on this issue, but should this be shown through further study, then to answer your question, I would probably say yes. I think personally, if your in a relationship and your XMRV + it would be useful to know the status of your partner for the very reason you suggest, until we know more...or employ safe sex practices etc.

Re Dr Bells and the observations of other drs, yes...there have been varying reports on couples and illness spread.

Again this is something that will have to be carefully studied. XMRV infected PWCFS might transpire to be only a small percentage of the total CFS population (as WPI went looking for it in the sickest of the CFS patients.) Therefore, an observation of a wide spread of CFS patients over a long period with low risk of associated illness in a partner might not be as meaningful as say, isolating the sickest of that population (that are now XMRV+) and then looking at prevalence of illness in partners.

The bottom line for partners is really how robust their immune systems are, as to their degree of risk. This is also relevant to HIV susceptibility. Of course none of us have any idea of when our immune system might reach that critical point where it might fail and if partners find the idea of getting tested confronting or premature at this stage, then looking after their immune health, engaging in safe sex and other precautions make sene where one person is positive and the other negative or status unknown.....until science can tell us more.

 

[Rrrr]

::sigh::

depressing. and i fear we won't really know all about this stuff for a long long time. i'm now watching AND THE BAND PLAYED ON (a movie). it is based on the book of the same name and it chronicles the shockingly slow (lack of) progression of HIV/AIDS, politically and scientifically. i recommend everyone watch this movie. netflix has it.

http://movies.netflix.com/WiMovie/And_the_Band_Played_On/60020052?trkid=2361637#height1651

 

[andreamarie]

My late cousin died of AIDS. We were like brother and sister; I was the only family member he told that he was HIV positive. Aside from the predictable politics, there was a research war that slowed down treatment, etc. Gallo, in the U.S., claimed that he found HIV, when in truth, it was a French scientist (remember Rock Hudson went to France?) This debate slowed things down enormously.
When Gallo gave a lecture, AIDS activists went and whistled every six minutes, because someone was dying of AIDS every six minutes.
I was aware of the initial beliefs about contagion because I was with my cousin and later helped take care of him. For personal reasons, I have very little respect for Dr. Bell, and feel much of what he says is anecdotal. I was slow onset and no one has addressed contagion in that group. I know no one who was in direct contact got CFS, but I can't say that someone I had very casual contact and never saw again, got CFS.

 

[andreamarie]

I was very aware of the AIDS fight because my late cousin died of AIDS. We were like brother and sister; I was the only family member he told that he was HIV positve.
There was an egomaniac research situation that slowed things down. Gallo, in the U.S., claimed he discovered the HIV virus when actually it was discovered by a French scientist (remember Rock Hudson going to France?) I don't know the exact details but this slowed down the research and the treatment.
AIDS activists attended a lecture Gallo was giving and used a whistle every six minutes because that was the rate AIDS that patients were dying.
The movie, "The Band Played On" is good, but the book is riveting and an easy read.
The breast cancer women learned a lot from the AIDS activists; even breast cancer had little funding at that time considering the death rate.

 

[Rrrr]

andreamarie, i'm so sorry to hear about your loss. it is tragic that politics and egos get in the way of lives!!!! and i fear that is happening again in our current struggle.

we need to ACT UP, but we are all so weak and bedridden. eventually, soon i think, we WILL be acting up, loud and proud.

 

[Rrrr]

here is a summary of the talk by a blogger!

http://confessionsfromthefibrofog.blogspot.com/

 

[JT1024]

Just a correction Rrr posting, he mentioned 6 weeks not 6 months. But other than that, it was rather uneventful.

GG

PS I spoke to him pretty much one on one, because I was part of his NIH study in Ithaca, NY, even though I was not in the original outbreak. I wish I had known others from this forum were going to be there, would have like to have met you also! There were a few people there from my Boston CFIDS group. FYI

Hi Ggingues,

We missed each other. I was there also and was able to talk to Dr. Bell personally. I am still recovering so I've not been able to respond or post to much of anything. One thing I learned (or was reminded of) from attending the lecture was the diversity among patients. While there are many who have suffered for many years and realize the lack of knowledge among most health care providers, there are those who are new to ME/CFS who are at the very beginning of the learning curve. While those who have suffered for many years demand acknowledgement, research, and treatment options, I was shocked to meet patients and families of patients who really had no clue.

I fault the CDC for negligence in educating physicians and the general public. Certain "advocacy" organizations are grossly at fault as well. They do not deserve to be considered THE patient advocacy organization for patients. Patients will and have spoken. It is only a matter of time before the pathetic politically correct advocacy agent organization currently falsely representing patients is surpassed by one or more that are truly represent patients.

Wish we could have met!
~ JT


ETA... I don't agree with Dr. Bell's thoughts on infectivity.