XMRV--Re-infection from partner?

[Sushi]

Hi Everyone,

I don't want to stoke fear-fires--especially when we don't have the research to back it up--but De Meirleir is pretty sure an active XMRV infection can be passed on through sexual contact. He wants to test the partners of XMRV+ patients whom he is treating and treat them as well--if they have an active infection.

At least this is what I am getting from a Dutch forum. I am reading it with the dubious help of Google Chrome and its automatic translation function, so there is a lot of room for error.

Here is Chrome's translation:

"So this afternoon I was at the Meirleir.
I'm MLV-positive.
My friend was there and it is so: if you're positive, there is much chance that your partner is also positive, BUT, he expects that most partners simply antibodies will have (serology so), and so just healthy carriers . but if the partner is the active form, he must also be treated differently because he can always re-infect you and has no sense to treat yourself, because you just re-active can be infected by your partner."

Here is a link for those who want to read the discussion: http://www.mecvs.net/index.php?name...pic&t=3702&postdays=0&postorder=asc&start=105

Sushi

 

[Jemal]

I am Dutch and Chrome's translation is pretty good (for a program).

A patient of De Meirleir does indeed claim that the doctor said that you can reinfect each other. This sounds pretty dubious to me though, as at the moment there is no cure for this retrovirus. You will always stay infected.

I do think though that when the time comes and XMRV/MLV are found to be a cause of ME/CFS, you need to have your entire family tested and treated. Viruses can mutate and you can be infected by different strains of a virus. So treating infected family members does seem very wise.

 

[Esther12]

I think there's talk of 're-infection' being bad with HIV too - it doesn't require that either party were previously cured though. Just that being re-exposed can be bad.

I think it's still a bit controversial with HIV, and we know so much less about XMRV that I'm not sure anyone can realy say.

 

[gregf]

We need to be cautious as proof is not certain yet.
But on the other hand there is a need to warn people.

So here are my own conclusions that I am using personally.

XMRV should be treated at least with the same precautions as HIV.
In fact, it may be more contagious then HIV as it may be transmissable
in saliva and aerosol (sneezing) in close quarters.

Therefore, no one with grounds to suspect they have XMRV should have
sex with anyone who does not have XMRV. They should not share any item
in contact with blood or saliva, such as tooth brushes. Eating utensils and
cups should be thoroughly washed before use by others.

Kissing mouth to mouth, may cause transmission. But this may turn out to be
a small risk.

People likely to be XMRV positive should not have children. There is risk of passing
XMRV on to the baby as happens with HIV. In addition, even if the same precautions
as HIV mothers take are used, this may not be enough as there may be a chance
children have an Autism spectrum disorder and this probably happens to the fetus
before birth.

Additionally when the virus is passed on, there is a significant chance of the recipient
getting one of many forms of cancer. Family members who get the virus, but do not
get ME, are at a higher risk of cancer than the patient with ME.

I think that many people who have had lymphomas, thyroid cancer, brain tumours,
and other cancers, are really ME victims, who developed cancer at the same time.
Their tiredness and other symptoms are concluded to be symptoms of cancer.

I think it may be possible that ME is the bodies defence against the virus or even cancer.

People probably with XMRV should take great care to capture a sneeze or cough
in a hanky or tissue.

One other topic has received little research yet : is XMRV endogenous in humans ?
If it is, it is passed on to a baby in the DNA of germ cells, that is sperm and eggs.
Fortunatly, it looks like XMRV is not endogenous in humans as some/most babys
of XMRV patients are born XMRV negative.

At the moment I am looking for a partner who is (or is likely) XMRV+ and accepts
that, at least until we know more, that we can not have children. Cross transmission
is likely, more likely from partners with a higher viral load, which to me means men
may be at higher risk from their female partner, as sadly women suffer more with ME
probably because of higher viral load due to hormonal reactivation of the virus.

As some one else here said, God what a mess.

Also I believe that medical authorities have known, or were told this for over 20 years.
Which makes the CDC position totally criminal. I do not want the CDC to change its
position on ME/CFS. The more they persist, the easier it will be to hang them in court.

May I also mention that I believe our greatest problem is patients who habitually call
this illness Chronic fatigue Syndrome. That is the name of psychiatric illness defined
by the CDC. We have ME. Until the court case is over we should use the compromise
name ME/CFS only to ensure the CDC is brought to justice for causing a world wide epidemic.

 

[urbantravels]

I think it's getting pretty far ahead of what we know now to worry about "re-infection" from an existing partner. It's an issue with HIV even if both partners are positive, because HIV mutates so rapidly, so you could catch some different strains from a partner. We don't know enough yet to know if it's an issue with XMRV, and if it's spread by more casual contact (saliva) then all bets are off.

Taking up with a new partner is a whole other kettle of fish. I worry about this one myself, because I'm single, and not even a little bit ready to write off my future sex life, let alone ever having another long-term partner. Sigh.

 

[Tia]

We need to be cautious as proof is not certain yet.
But on the other hand there is a need to warn people.

So here are my own conclusions that I am using personally.

XMRV should be treated at least with the same precautions as HIV.
In fact, it may be more contagious then HIV as it may be transmissable
in saliva and aerosol (sneezing) in close quarters.

Therefore, no one with grounds to suspect they have XMRV should have
sex with anyone who does not have XMRV. They should not share any item
in contact with blood or saliva, such as tooth brushes. Eating utensils and
cups should be thoroughly washed before use by others.

Kissing mouth to mouth, may cause transmission. But this may turn out to be
a small risk.

People likely to be XMRV positive should not have children. There is risk of passing
XMRV on to the baby as happens with HIV. In addition, even if the same precautions
as HIV mothers take are used, this may not be enough as there may be a chance
children have an Autism spectrum disorder and this probably happens to the fetus
before birth.

Additionally when the virus is passed on, there is a significant chance of the recipient
getting one of many forms of cancer. Family members who get the virus, but do not
get ME, are at a higher risk of cancer than the patient with ME.

I think that many people who have had lymphomas, thyroid cancer, brain tumours,
and other cancers, are really ME victims, who developed cancer at the same time.
Their tiredness and other symptoms are concluded to be symptoms of cancer.

I think it may be possible that ME is the bodies defence against the virus or even cancer.

People probably with XMRV should take great care to capture a sneeze or cough
in a hanky or tissue.

One other topic has received little research yet : is XMRV endogenous in humans ?
If it is, it is passed on to a baby in the DNA of germ cells, that is sperm and eggs.
Fortunatly, it looks like XMRV is not endogenous in humans as some/most babys
of XMRV patients are born XMRV negative.

At the moment I am looking for a partner who is (or is likely) XMRV+ and accepts
that, at least until we know more, that we can not have children. Cross transmission
is likely, more likely from partners with a higher viral load, which to me means men
may be at higher risk from their female partner, as sadly women suffer more with ME
probably because of higher viral load due to hormonal reactivation of the virus.

As some one else here said, God what a mess.

Also I believe that medical authorities have known, or were told this for over 20 years.
Which makes the CDC position totally criminal. I do not want the CDC to change its
position on ME/CFS. The more they persist, the easier it will be to hang them in court.

May I also mention that I believe our greatest problem is patients who habitually call
this illness Chronic fatigue Syndrome. That is the name of psychiatric illness defined
by the CDC. We have ME. Until the court case is over we should use the compromise
name ME/CFS only to ensure the CDC is brought to justice for causing a world wide epidemic.

Couldn't agree more on the part about finding a partner with xmrv who accepts that there will be no children.

Also about not calling it Chronic Fatigue Syndrom but ME, because just like you say it sounds like that old stigma where they won't take us seriously, but with ME it sounds more like MS and everyone knows that's serious.

 

[Jemal]

If this virus is already in 6% of the population (maybe more, because tests are still giving false negatives and there seem to be different strains) and it can be spread by things like saliva, then it's already too late to stop this virus from spreading. Many people with HIV don't even know they have HIV, and that doesn't only happen in "third world" countries. Some people don't even want to know they have a virus and if they know, they don't want to have a treatment.

In order to stop this virus you would have to test the entire population and quarantaine the infected or vaccinate everyone. Both options are not feasible. You can't quarantaine 6% of the population, without massive riots and vaccinations are not available at the moment. Both options would come at immense cost. Also, not everyone wants to be vaccinated either (because of religion for example).

Besides that, I don't think people are going to stop having babies, because they have XMRV. Especially if they are feeling fine!

It's highly likely it's already too late. If this virus is for real, it has gained a foothold and it's here to stay. We then need to adjust to that reality and the medical world needs to work around the clock to find treatments and vaccines. Only a massive vaccination program might protect a part of the population from being infected with such a virus. People with XMRV will continue to have children though and in the end it will still be likely that XMRV will infect almost everyone (because XMRV+ and XMRV- will mix).

Now, there's still much that we don't know. Especially how the virus is transmitted and if everyone is in danger or only under certain circumstances for example, so the above is a theory. But I genuinely believe it's too late to stop this virus, it will continue to be part of the DNA of at least some of the population. At least until we find technology to cut such viruses from our DNA... and that is science-fiction for now.

 

[urbantravels]

I agree with Jemal that the cat is very likely already out of the bag. Prevention of ME/CFS is probably going to be not as simple as avoiding XMRV infection. If 5% of the population is already carrying it, but only our small numbers of ME/CFS patients are actually sick from it, then it's far from being just our problem - it's everybody's problem.

 

[alex3619]

Hi Jemal

I recall reading somewhere, probably on PR, of at least two studies aimed at either removing HIV from the genome or inactivating it via hypermutation. This is in animal testing stage, but I don't recall any details. If it can be translated to XMRV, we have a cure - removal from the genetic code. This is however one, maybe two decades away for us.

HIV can also be prevented from transmission to unborn children using antiretrovirals. If it hasn't been genetically incorporated into the germline, it can be stopped. It should be so for XMRV.

On precautions to prevent spread I have been trying to prevent risk since last year. I do notice I have slipped up when I am very tired and in public, because my brain is offline, because I ordered a dessert at a restaurant dinner I was at recently (cutlery, saliva risk). However, most with the virus don't even know they have it. There are no signs. On the other hand, even living closely with someone for decades only gives a 50% chance or so of transmitting it. All preventative measures are precautionary only at this point, and it may be that some of them will be unnecessary.

Bye
Alex

 

[Jemal]

I recall reading somewhere, probably on PR, of at least two studies aimed at either removing HIV from the genome or inactivating it via hypermutation. This is in animal testing stage, but I don't recall any details. If it can be translated to XMRV, we have a cure - removal from the genetic code. This is however one, maybe two decades away for us.

That's good news and I certainly hope they will be able to come up with something to deactivate retroviruses. Removing stuff from our genetic code does sound a bit scary though, at least the potential side effects.

HIV can also be prevented from transmission to unborn children using antiretrovirals. If it hasn't been genetically incorporated into the germline, it can be stopped. It should be so for XMRV.

True, but for many people this treatment is too expensive.

Also with the arrival of more successfull treatmentss like HAART, more people are taking risks again. A few weeks ago it was announced that the amount of HIV infections is rising again in the Netherlands. I think the amount of HIV infections is now in general rising again, after years of dropping. So, more than 30 years after its discovery, HIV is still claiming many victims. The amount of people living with HIV is still rising, though the amount of deaths is now mostly dropping.

This is why I am a bit pessimistic about stopping XMRV.

 

[Ellkaye]

Interesting thread

 

[Esther12]

Interesting thread

All rather irrelevant now seeing as the false XMRV reports turned out to be a result of contamination.

I've been on this forum for five years.... I should have found a cure after 6,000 posts!

 

[Ellkaye]

Interesting nonetheless.RV's are really hard to find.This particular one must be really tricky to pin down.Observationally I see there were lots of negative papers.Practically and really however I see and hear and also personally experience the exact opposite to what those negative papers say.Pretty grim stuff really how people have been fooled and brainwashed into thinking this was a false lead.That's just plain eery,but hey with all those negative papers it's easy to be fooled.High stakes folks.If you think they care about us,think again.Think of a time you lied.And think how far you went to dig that lie as deep as you could, and why..
You just got to go in and take a nitty gritty look yourself.Clear the smoke from your visor,open your eyes,look left,look right,sigh,and then take a deep breath and take a risk and see if practically speaking the left or the right side really have it,no matter what the papers say.I never thought life was like this.VW (and others to back them up) made tons of statements about how their cars were eco-friendly until one day all that was proven wrong by someone/one group(who didn't stand a chance) who went in and took a practical look and against the odds found the complete inverse truth that rocked the industry.

 

[JES]

There is no evidence that XMRV can infect humans. Rather than going after some extremely unlikely virus, there are lot more common viruses that could be a trigger for CFS. In particular enteroviruses as Dr. Chia has found in CFS patients, those are viruses that we actually know infect humans regularly and have been linked to diabetes type 1 and several other diseases as well. I see enteroviruses as the most promising link to this disease along with the Rituximab/B-cell study.

 

[Ellkaye]

If you ask quite a few respected physicians who specialize in this disease they will tell you that they suspect a RV even if they have no concrete evidence for it at all. The more cases they see the more convinced they become that a RV is at play but they can't prove it. It's a high suspicion at best based on their decades of clinical experience. That counts.

But hey the papers say the opposite so lets just believe what the papers say.

At some stage the real men go in there with two firm balls and see what's really going on. Like in the car industry, VW and many others,said VW cars were clean.Until a group took a look with an outsiders view,and knocked n rocked their blocks off.

Others (definitive studiers) go on Dr Oz and let him talk about a woman's disease for all you women out there...Man up u men dont be a woman dont let yourselves want to get diagnosed as a woman!! Ha!Yeah,all u women out there cytokining n chemoking in a way that suits all of u fatigued and virus recovering non ME people in the big bag of wiiiide epidemiology..Have some cbt/get gently now dont excite yourselves too much or here have an empathetic shot of rituximab or IVIG globulin if we can really identify you but hey u may just be recovering from ebv or a nasty non ME related virus that disturbed the balance in your immune system temporarily n that s all but a lot of true ME ers have no ebv cmv or even hhv6 or that type of temporary or memory immune imbalance but we ll try n fix your cytokines chemokines pre/post three year infection which we cant distinguish from ME anyway n see if u all get a quick fix n booooost.. it's messy. Rituximab has unknown mechanisms too. The unknown meeting the unknown..Messy when quite a few clinicians believe it is a RV more than anything else.

Or treat with rituximab and make the RV disappear. Now u see it now u don't. For how long....? Does rituximab treat depression???? It may do....Helps u see things brighter. I just pray the rituximabers know what they re doing. It s really strong. We dont want to become the laughing stock one last time. That would please many though mind u. There ll be no more meds tested ever again.

It was never going to be easy. I think some of the researchers who think they're doing the right thing have no flipping idea how they have no control over their own results (rituximab researchers).Not their fault at all but they don't know what they're looking at and am not sure publication is the right path to follow morally if a RV is at play or if their colleagues who actually see hundreds n thousands of patients, tell them they suspect a RV clinically.

The End Game of ME. There was never going to be any other way and deep down everybody knows it if they ask themselves the searching questions.

I think everyone's woken up.I think everyone's smelt the coffee.Now it's just got to register what kind of coffee it is really really is.That's All Folks. Or just read the negative negative negative negative negative papers the rest of your lives.

Charles Van Doren : I lied to the American people. I lied about what I knew and then I lied about what I did not know.
Those Dr Oz dr's who were on that show should be ashamed of themselves.

One big poker game people.
Be intelligent n call their bluffs

 

[Valentijn]

But hey the papers say the opposite so lets just believe what the papers say.

It was quality research done by quality researchers who are trustworthy.

XMRV is dead, and it's time to move on.

 

[Ellkaye]

'xmrv' was always 'dead'. Agreed.
It was said to be 'dead' from the word go in October 2009 by the researchers who found xmrv-like who were highly cautious and very suspicious themveryselves of 'xmrv'.

My take on this now is becoming that those who want the rv 'xmrv-like' to be dead to be just left to think that.Doesnt change my life, but there is a responsibility to get the severely ill better somehow.

If 1 out of 2 samples in the same person are positive in many people in a definitive 2012 study you get a 3rd sample.It's standard protocol as 2 positives out of 3 validates a positive which validates the study.The 3rd samples were withheld.The 3rd samples were withheld in these 1 out of 2 positives sets in 2012.

Xmrv was always a dead end. And the very original smart 2009 researchers were saying it in their own words of that time right from day 1.They were suspicious and doubtful of xmrv.So they did very separate and very distinct xmrv-like experiments.These were never replicated,never assessed.It takes a lot of skill and time at that level to understand it all especially when people who found just xmrv originally in 2006 in prostate cancer dont admit their mistakes and MASSES of other researchers dont realize the difference and keep making the wrong useless non true replication assumptions rushingly and unknowingly.

The misinformation is just plain catastrophic.
The 2012 study was ok for xmrv but did nothing for xmrv-like which was a vital integral part of the 2009 discovery.Those 2009 researchers had experience which is why they ran different experiments with xmrv and xmrv-like because they learned 25years prior to that that that was the only way to do it.

It's grim that nobody heard that cry,and also that the 3rd sample never got supplied in 2012. Therein lies the real tragedy.

So what do you do as a patient in this situation?? You move on with the best available science and that INCLUDES all the data and all the appendixed data and all the submissions accepted or not by the journal, from the retracted 2009 paper.

Doesn't change my life one bit if this falls on deaf ears.Maybe people are just unaware.Plain crazy but the negative papers bear no significance at all really !!
Other big expert labs around the world should have got involved in 2009. Given the human catastrophy (of the severely sick) they need to be pressed to get involved now and clean this up once and for all.