Article: WPI Says No to Retraction Request/ Levy Study Dashes Hopes /NCI Shuts the Door on XMRV

Article: WPI Responds To Retraction Request/ Levy XMRV Study Dashes Hopes/NCI Shuts t

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I don't think that a retrovirus has anything to do with true ME, but it might with CFS.

hi, Tulip, you didn't answer my question about that: why couldn't a retrovirus (doesn't need to be XMRV specifically; I'm talking any retrovirus here) damaging the immune system provide the answer to why some people are not able to recover from an enteroviral infection?

I'm not saying you need to believe this; I just want to know why you would categorically rule it out, a priori. thanks.

 

hi, Tulip, you didn't answer my question about that: why couldn't a retrovirus (doesn't need to be XMRV specifically; I'm talking any retrovirus here) damaging the immune system provide the answer to why some people are not able to recover from an enteroviral infection?

I'm not saying you need to believe this; I just want to know why you would categorically rule it out, a priori. thanks.

If we are talking about true ME here, not CFS it is because it does not make sense. How do people including young children that have never had sex or a blood transfusion or shared needles get it?. You can't catch a retrovirus by coughing or sneezing on someone. Why do people go into remission without any drugs?. It doesn't make any sense, look at HIV you can't go into remission until you are taking retrovirals. Dr Hyde has said himself that the virus that causes ME has a 4-7 day incubation period. It just doesn't fit.

 

If we are talking about true ME here, not CFS it is because it does not make sense. How do people including young children that have never had sex or a blood transfusion or shared needles get it?. You can't catch a retrovirus by coughing or sneezing on someone. Why do people go into remission without any drugs?. It doesn't make any sense, look at HIV you can't go into remission until you are taking retrovirals. Dr Hyde has said himself that the virus that causes ME has a 4-7 day incubation period. It just doesn't fit.

Yes, we are talking about a disease with neurological features and PEM.

HTLV (the blood cancer retrovirus) is transmitted vertically and is not an STD. (In all 2 human infectious retroviruses so far identified, neither of those 2 are transmitted by air/by droplets, but since we have 2 retroviruses with 2 different modes of transmission, I don't know why we couldn't end up 3 with 3.) HIV is a totally different retovirus and we can't expect any other retrovirus to conform to its behaviour. The theory here is that a pre-existing retrovirus infection damaged the immune system--but not completely took it down like in AIDS--and then an enterovirus outbreak with the appropriate incubation came along and the people with pre-existing retroviral infection-damaged immune system are the ones that didn't recover. The remissions could be that with a partially-working immune system, maybe the body could temporarily win the (non-retroviral) infection battles for a while.

 

If we are talking about true ME here, not CFS it is because it does not make sense. How do people including young children that have never had sex or a blood transfusion or shared needles get it?. You can't catch a retrovirus by coughing or sneezing on someone. Why do people go into remission without any drugs?. It doesn't make any sense, look at HIV you can't go into remission until you are taking retrovirals. Dr Hyde has said himself that the virus that causes ME has a 4-7 day incubation period. It just doesn't fit.

Hi Tulip, first we don't know if XMRV can be transmitted via saliva. If it can, its a whole new game. HIV can't, XMRV is not HIV. We can inherit the virus, we can get it from contaminated cuts or scrapes, and so on - don't forget, ME and CFS are spreading slowly, there are reasons why this is so.

If this is a retrovirus that is close to undetectable by the body, then the body will stop fighting once it can't see it any more. The virus is still there though, may even still be spreading in the tissues, but with such low blood load that the immune system can't see it. This explains remissions.

Third, the incubation period hypothesis has been shown to be invalid for XMRV repeatedly. This kind of virus could fit with a short incubation period or a long one, in different patients - its irrelevant. From my understanding XMRV initially will be a very mild infection, might not be worse than a minor cold. Then viral numbers grow. Then you get something else. The incubation period you mention is the something else, the trigger. It is not the cause. Hence XMRV still fits.

The immune system can effectively attack XMRV as well - it may be that most infections are symptom free, you never even know you are infected. In those patients in which one XMRV virion survives to replicate, the game is over. It might take a year, it might take twenty, but eventually there will be enough virus to cause problems under the right circumstances. Those circumstances determine if you get sick or not. In the case of ME and CFS it would be the usual triggers - entero-viruses, herpes viruses, mold toxins etc.

Now XMRV might not be associated with ME or CFS, it might not cause any disease issues, we still don't have the answer to that, but the arguments you mention from Byron Hyde are easily refutable.

Bye
Alex

 

Willow and Alex,

I just don't see it that way. Enteroviruses are linked to type 1 diabetes and look what that does to sufferers bodies and there is no retrovirus involved, the same with polio, there is no retrovirus involved and all the other diseases associated with enteroviruses.

Nope, i'm firmly in the enterovirus camp

 

Tulip:

I agree that enteroviruses are a big part of the CFS puzzle. I am amazed that there is not more attention being paid to them here. I have two coxsackie and one echovirus infections going on in me now. It is my belief that these predated my CFS symptoms by many many years. I grew up in an area where we had shallow wells and inadequate septic systems. My grandafther died from stomach cancer, and my father and uncle died from CFS complications. I have had part of my colon removed due to multiple polyps forming.

A few years ago, I believed that my CFS started with a cold in 1991. Now, when I look back, I realize that I have had many of my symptoms, to a lesser degree, for a long time, and the cold I had in 1991 just caused everything to be greatly intensified.

I am agnostic about XMRV right now. I believe that answers about XMRV will come eventually, but if people can live with XMRV symptom free, I want to be one of those people.

I was tested by Dr. Chia's lab, and the tests showed that more than 50% of the cells in my stomach contained a virus. I have been taking oxymatrine/equilibrant for over two years now, and I finally started showing some improvement about 6 months ago. For many years I was taking several Zantacs every day, and had constant diarrhea problems. After 27 months on Oxy, I am now at the point where I rarely need a Zantac, and my stool is occasionally firm. I notice that the way I feel every day is closely related to the way my stomach and colon feel.

A good medication for enteroviruses would answer a lot of questions for us all.

John

 

Willow and Alex,

I just don't see it that way. Enteroviruses are linked to type 1 diabetes and look what that does to sufferers bodies and there is no retrovirus involved, the same with polio, there is no retrovirus involved and all the other diseases associated with enteroviruses.

Nope, i'm firmly in the enterovirus camp

Hi Tulip, I am not anti-enterovirus as a cause of ME or CFS. Enteroviral infections need to be investigated more, I agree with that. I was just claiming that particular arguments against retroviral infections are not valid.

That doesn't mean we even have a retrovirus - ask me again after the Lipkin and BWG studies are out. My claim is only that we need both the Lipkin and BWG studies to be sure. If they are both unambiguous and against XMRV association, we have our answer. If they support XMRV association, we still need to work on causal mechanisms before we can know what XMRV is doing.

Bye
Alex

 

Enterovirus is most likely the viral trigger for the disease ME, doesnt mean we dont have retrovirus' as well. We have dozens upon dozens of virus, crazy stuff most people dont get, so having a retrovirus too would'nt be a surprise.

We have lots of ups and downs in this disease because unlike HIV, we are dealing with many many mutating genes, constant change in gene expression, sometimes for the better, sometimes for the worse resulting in up n down periods.

 

Hi Tulip, I am not anti-enterovirus as a cause of ME or CFS. Enteroviral infections need to be investigated more, I agree with that. I was just claiming that particular arguments against retroviral infections are not valid.

That doesn't mean we even have a retrovirus

Same from me. We don't know whether we do or do not have a retrovirus (XMRV or any other), and either way enterovirus infections are extremely important.

Willow

 

Hello John,
I've read quite a few of your posts here and on the HHV6 forum as I am also interested in the enterovirus infection. I noticed youare taking LDN. And you mentioned taking oxymatrine for 2 years but not noticing effects until 6 months. Just wondering if its possible the effects you started noticing are from the LDN ? Or did the good effects from the oxymatrine start before the LDN ?

Regards,
GP

Tulip:

I agree that enteroviruses are a big part of the CFS puzzle. I am amazed that there is not more attention being paid to them here. I have two coxsackie and one echovirus infections going on in me now. It is my belief that these predated my CFS symptoms by many many years. I grew up in an area where we had shallow wells and inadequate septic systems. My grandafther died from stomach cancer, and my father and uncle died from CFS complications. I have had part of my colon removed due to multiple polyps forming.

A few years ago, I believed that my CFS started with a cold in 1991. Now, when I look back, I realize that I have had many of my symptoms, to a lesser degree, for a long time, and the cold I had in 1991 just caused everything to be greatly intensified.

I am agnostic about XMRV right now. I believe that answers about XMRV will come eventually, but if people can live with XMRV symptom free, I want to be one of those people.

I was tested by Dr. Chia's lab, and the tests showed that more than 50% of the cells in my stomach contained a virus. I have been taking oxymatrine/equilibrant for over two years now, and I finally started showing some improvement about 6 months ago. For many years I was taking several Zantacs every day, and had constant diarrhea problems. After 27 months on Oxy, I am now at the point where I rarely need a Zantac, and my stool is occasionally firm. I notice that the way I feel every day is closely related to the way my stomach and colon feel.

A good medication for enteroviruses would answer a lot of questions for us all.

John