News from WPI symposium: Name change to be proposed for XMRV

[Stone]

Leaving "murine" out of the name may also lessen curiousity about how a mouse virus jumped into the human population. I have had the feeling that the powers that be don't want that looked at too closely. I've even wondered (occasionally, when I'm in a conspiracy frame of mind) if that has anything to do with the UK's top secret ME/CFS files.

I've been wondering along similar lines. I have this thought in the back of my mind that somehow this retrovirus found it's way into humans via immunizations. Both my sisters (that is, all of my siblings) have CFS, and I can remember more than one occasion where we all received the same vaccines at the same time. Mom wasn't big on taking us to the doctor so much and we were commonly seen all together for the sake of convenience. It's hard to explain how all of my siblings and myself have CFS and our mother has no signs of any neuro-immune pathology going on at all. I have a few other theories as well; this is just one of them.

I remember reading an article about 18 years ago on how the HIV virus jumped into humans. I can't remember every detail of the article because it was so long ago, but as I recall the article proposed that this happened when Dr. Jonas Salk was working on the polio vaccine. He injected polio virus into monkeys and then harvested their organs and made different trial versions of the vaccine. The human polio virus did not survive in the monkeys of course, but the monkeys' immune systems did produce antibodies that were close enough to be effective, or something like that. He actually tested it on humans by spraying it into the throats of tribal peoples and then waiting to see if they developed immunity to polio (remember this was the 1950's). Little did he know that he was also introducing all sorts of live simian viruses at the time and just a few little mutations later, there was HIV. This was in a very long article in a laboratory science magazine. It wasn't a scientific journal per se, but it was a magazine for pathologists, medical technologists, biochemists and other laboratorians. Like a Rolling Stone for lab geeks.

I wonder sometimes if any of the vaccines that were used in the 1960's were similarly made using mice, or if something that could fit a similar scenario could have possibly taken place. It could happen even if vaccines were simply manufactured in the same room/facility or with the same equipment that research with mice had been done. I'm also reasonably certain that if a company that may have unknowingly (at the time) done this would not be eager for this information to come out.

I'm not big on conspiracy theories myself, but for those who are, there's one for you.

 

[SA2]

I think leaving "murine" out of the name won't have any effect on any research into how/when the virus may have first infected humans. The virus' sequence clearly indicates it derives from the murine leukemia viruses. I think it is more important that the name indicate that this is a currently infectious human virus. (I believe that XMRV is different enough from the typical murine leukemia viruses that it can't even infect most mice, making it hard to find a good inexpensive animal model for XMRV infection). I also think that its important to distinguish the fact that XMRV did not derive from an endogenous human retrovirus (8% of the human genome consists of vast numbers of inactive endogenous retroviruses that got into our genome via retroviral infections of our ancient ancestors and XMRV is not one of them), but instead XMRV is a currently transmitted virus.

 

[CBS]

I think leaving "murine" out of the name won't have any effect on any research into how/when the virus may have first infected humans. The virus' sequence clearly indicates it derives from the murine leukemia viruses. I think it is more important that the name indicate that this is a currently infectious human virus. (I believe that XMRV is different enough from the typical murine leukemia viruses that it can't even infect most mice, making it hard to find a good inexpensive animal model for XMRV infection). I also think that its important to distinguish the fact that XMRV did not derive from an endogenous human retrovirus (8% of the human genome consists of vast numbers of inactive endogenous retroviruses that got into our genome via retroviral infections of our ancient ancestors and XMRV is not one of them), but instead XMRV is a currently transmitted virus.

I suspect that the lack of a good mouse model has been part of the problem.

To a large extent, biological science has been the science of the small lab animal (there was a story in wired last week about Dr. Robert Sapolsky and the impact of stress - who knew that neurons could regenerate? Our early assumptions about the inability of neurons to regenerate was based upon the absence of neural regeneration in really stressed lab animals. Turns out you do get some regeneration if the animals are in a healthy environment). Similarly, psychology has been the "science" of college freshman in need of extra credit.

Small lab animals and college freshman are both inexpensive and captive subjects. As Dr. Singh said last week, we've been studying the "low hanging fruit" (think pathogens not easily detectable in the blood but with wide spread tropism for a variety of organs - important stuff (that's hard to biopsy) like the brain and reproductive tissue as well as the , lymphatic tissue).

 

[xrayspex]

stone you are talking about this article:

http://www.whale.to/vaccines/curtis.htm

I had a subscription to Rolling Stone when that came out and have never forgotten that article. I posted about it here like a month ago somewhere, also about Edward Hooper

http://en.wikipedia.org/wiki/Edward_Hooper

fascinating on the same topic. I am not a scientist so I dont know but it seemed like they did very thorough jobs but the powers that be did their best to make them go away and succeeded I think. I don't understand how the cancer causing virus SV40 can be so under the radar, doesnt seem to be dispute it exists and came from vaccines and makes people sick.

However, I have also decided to lay off the topics of vaccines for now because it freaks people out and whips up red flags to doubters on all of these related issues more than anything it seems, some people who don't know anything about this will immediately peg ya as a conspiracy theory nut, plus if there is something to it, it will make the "powers that be" more nervous to bring that into the xmrv etc conversation so would rather get farther ahead in other ways and then maybe it could be dealt with. I never heard of SV40 until this summer......strange, why wasnt that on front pages a lot? etc

 

[biophile]

I tried entering http://www.hgrad.info into my internet browser and I was redirected to http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus !

 

[alex3619]

Hi eric_s

We already have hints that more than one virus has been found (the Alter leak). The researchers can speak for themselves, but if I were one I would not want to advertise that we have found other similar viruses - until publication day. Numbering the viruses would be a giveaway. However I am just going though possibilities, we have far too little data to be certain of much at this point. If the Alter paper comes out next week, we may hve more to go on.

Bye,
Alex

Hi Alex

I don't think so. If they knew another human gamma retrovirus, then it wouldn't make sense to name this one "Human Gamma Retrovirus", without a number. Or what do you think?

Eric

 

[alex3619]

Hi SA2, I think the proposed name change signals a change in attitude. "Xenotropic" could imply a passenger or opportunistic-only infection. "Human" implies a pathogen a lot more than an opportunistic infection. I think we know from the impact of "chronic fatigue" just how much a name can influence medical opinion and research. This could be a long term strategic move, not a scientific one, and may not imply any new science (but I hope it does). Bye, Alex

I think leaving "murine" out of the name won't have any effect on any research into how/when the virus may have first infected humans. The virus' sequence clearly indicates it derives from the murine leukemia viruses.

 

[bullybeef]

I tried entering http://www.hgrad.info into my internet browser and I was redirected to http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus !

Great idea, and how weird for it to do that.

 

[VillageLife]

Great idea, and how weird for it to do that.

that is wierd http://www.hgrad.info sends you to xmrv on wiki!!! (What does everyone think of this?)

 

[caledonia]

Probably some PWC somewhere who reads this stuff created the site on Aug. 19th, then put in a referrer to wikipedia. The rest of the info is run through a privacy service so it's fake. The DNS reads UK origin, but that could be fake too, not sure.

Domain ID34256267-LRMS
Domain Name:HGRAD.INFO
Created On:19-Aug-2010 20:36:20 UTC
Last Updated On:19-Aug-2010 21:00:59 UTC
Expiration Date:19-Aug-2011 20:36:20 UTC
Sponsoring Registrar:Tucows Inc. (R139-LRMS)
Status:CLIENT TRANSFER PROHIBITED
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Registrant ID:tu0D3T0oFSxngEQB
Registrant Name:contactprivacy.com
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Registrant Street1:96 Mowat Ave
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Registrant City:Toronto
Registrant State/Province:ON
Registrant Postal Code:M6K3M1
Registrant Country:CA
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Billing ID:tu0D3T0oFSxngEQB
Billing Name:contactprivacy.com
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Tech ID:tu0D3T0oFSxngEQB
Tech Name:contactprivacy.com
Tech Organization:Contactprivacy.com
Tech Street1:96 Mowat Ave
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Tech City:Toronto
Tech State/Province:ON
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Name Server:NS.123-REG.CO.UK
Name Server:NS2.123-REG.CO.UK

 

[caledonia]

Anyway, back to what I was going to originally going to post.

So I agree if they find other gamma retro viruses, it's easy enough to make them HGRV-1, HGRV-2 or A, B, C or whatever.

The next part is tricky. I could see several scenarios, some of which are more practical than others.

1) You're HGRV+ and you're sick, so you have HGRAD. This would cover whatever you're sick with - cancer, autism, CFS, GWS, etc.

2) You're HGRV+ and you're sick. Then you have HGRAD with the appellation of your former diagnosis added on. HGRAD-CFS, HGRAD-prostate cancer, HGRAD-autism, etc.

3) You're HGRV+ and you're sick. Then you have HGRAD with the appellation of your former diagnosis added on, but we get rid of CFS. You would have HGRAD-Mikovit's disease or whatever, HRGRAD-prostate cancer, HGRAD-autism.

4) You're HGRV+ and you're sick. There's a reclassification of neuroimmune diseases. If you have a neuroimmune disease like CFS, GWS, FM, MS, Lyme, etc., you have HGRAD-N or something similar; all those old names would disappear. HGRAD-N means HGRAD neuroimmune. HGRAD-NI? or NEI? So it would be HGRAD-N, HGRAD-prostate cancer, HGRAD-autism.

5) If you have a disease that is sometimes caused by HGRV, but you're HGRV-, then you could have non-HGRV CFS, or non-HGRV prostate cancer or non-HGRV autism.

Anyway, with so many people affected, this is going to be as big as diabetes. I can foresee HGRV testing done as a matter of course when you go in for a checkup from your GP.

 

[Dr. Yes]

So I agree if they find other gamma retro viruses, it's easy enough to make them HGRV-1, HGRV-2 or A, B, C or whatever.

Except that the suffixes 1, 2, etc. usually refer to viruses that are very closely related, such as HTLV's 1 and 2. Gammaretroviruses are much larger group with far more diversity; also, this classification would get problematic if major genetic variants of XMRV - or "HGRV" - are found (those would normally get the type 1, 2, etc. designation).

Personally, I think HGRAD just sounds silly. C'mon WPI & friends.. you guys KNOW how long we've waited for a cool name... give us a break!! HGRAD-N-ME or whatever sounds like the place in the library where they put the oversize books.

 

[Gemini]

I really think (if we wish to do so) we can call it what WE want to call it..... IF we could agree in majority on a common name, we could simply start using it and it would take hold eventually, I think.

Stone,

How about asking Cort to do a PR poll on names we like?

Then submit results to the Chair of the September NIH meeting?

Gemini

 

[Gemini]

Personally, I think HGRAD just sounds silly. C'mon WPI & friends.. you guys KNOW how long we've waited for a cool name... give us a break!! HGRAD-N-ME or whatever sounds like the place in the library where they put the oversize books.

Dr. Yes,

The immune system findings WPI says are coming might help us come up with a better name related to the cause or signs.

Gemini

 

[Sean]

Whatever the name is we can have a name of our own choosing if we like. Take ALS for example. That one has the official 'scientific' name ALS, but is most often referred to by it's 'common' name, Lou Gherig's disease.

Only in the USA. The rest of the world calls it motor neuron disease.

 

[Sean]

The problem for the CDC, Wessely, et al, is that if a majority of the patients that have been getting the label CFS are actually XMRV+, then they are going to have to explain how they got it so wrong. They can't just arbitrarily redefine it and say, 'oh well all those +ve patients don't really have CFS', when that is exactly the label they were given for 25 years. That is just circular reasoning, which will not go down well with the real scientists. The psychs will not be able to sweep this under the carpet. At the very least they will have to answer for using extremely unreliable diagnostic methods, and inflicting dangerous 'exercise therapies' on the vast majority of CFS patients in whom it is contraindicated.

 

[bullybeef]

Anyway, back to what I was going to originally going to post.

So I agree if they find other gamma retro viruses, it's easy enough to make them HGRV-1, HGRV-2 or A, B, C or whatever.

The next part is tricky. I could see several scenarios, some of which are more practical than others.

1) You're HGRV+ and you're sick, so you have HGRAD. This would cover whatever you're sick with - cancer, autism, CFS, GWS, etc.

2) You're HGRV+ and you're sick. Then you have HGRAD with the appellation of your former diagnosis added on. HGRAD-CFS, HGRAD-prostate cancer, HGRAD-autism, etc.

3) You're HGRV+ and you're sick. Then you have HGRAD with the appellation of your former diagnosis added on, but we get rid of CFS. You would have HGRAD-Mikovit's disease or whatever, HRGRAD-prostate cancer, HGRAD-autism.

4) You're HGRV+ and you're sick. There's a reclassification of neuroimmune diseases. If you have a neuroimmune disease like CFS, GWS, FM, MS, Lyme, etc., you have HGRAD-N or something similar; all those old names would disappear. HGRAD-N means HGRAD neuroimmune. HGRAD-NI? or NEI? So it would be HGRAD-N, HGRAD-prostate cancer, HGRAD-autism.

5) If you have a disease that is sometimes caused by HGRV, but you're HGRV-, then you could have non-HGRV CFS, or non-HGRV prostate cancer or non-HGRV autism.

Anyway, with so many people affected, this is going to be as big as diabetes. I can foresee HGRV testing done as a matter of course when you go in for a checkup from your GP.

When the XMRV news broke last year, I asked my GP, how would they process everyone whom maybe positive. She replied, they wouldn't.

I also found this interesting stat:

An estimated 83,000 people were living with HIV in the UK at the end of 2008, of whom more than a quarter (27%) were unaware of their infection.
See: http://www.avert.org/uk-statistics.htm

So 22,410 people didn't know they were carrying HIV! If HIV isn't routinely screened now, why would they screen for XMRV? Also, a free health service may frown upon random patient XMRV testing just because of costs. About 13 years ago, the girl I was in a relationship with asked me to take a HIV test. I discussed it with my GP, and she said just taking the test could have ramifications with future life insurance policies, especially if your positive.

My guess is, they will only routinely test pregnant women, just as they do now with HIV. The issue there is, if the prevalence rates stand up, many women will find out they pregnant, and are carrying a retrovirus almost on a daily basis. If the woman is a carrier, it is likely their partner and child is. That's going to cause some major health and social issues in the near future.

 

[eric_s]

I agree. The question will be wheter based on the knowledge at that time (pre XMRV discovery or pre Science study) when they did something that caused harm in patients, if that constituted a breach of their duty of care (for those cases, probably most, where intent to cause harm is not given).

 

[SOC]

After sleeping on this HGRV thing, it occurred to me that proposing a new name for XMRV may be as simple as an effort to make the naming of all (from here on out, anyway) retroviruses more logical and consistant. Among other things, it would make electronic searches for related research easier. Then there's the issue of naming the virus after what it causes. We may not know, at the time of naming, everything the virus does, so a cause-based name could become obsolete or incorrect.

I'm thinking that by the proposed naming scheme,
HIV-1 and HIV-2 would become HLV-1a and HLV-1b, for example (Human LentiVirus)
SIV --> SLV
HTLV-1 and HTLV-2 --> HDRV-1 and HDRV-2
FeLV -->FeGRV (feline gammaretrovirus)
murine leukemia virus --> MGRV
XMRV -->HGRV

Such a naming scheme would make all the associations clearer -- viruses infecting humans would start with H, gammaretroviruses would end in GRV. A lot easier to understand.

If that's what the proposers were thinking, I'd like to suggest that the GRV part be reduced to GV (Gamma retroVirus) or GR(Gamma Retrovirus), so we would have the less unwieldy HGV or HGR rather than HGRV. Just a thought....

I'm still unsure about disease associations. HIV patients develop all kinds of secondary illnesses as they develop AIDS, I think, and to the best of my knowledge, they're still all designated AIDS patients.

We might benefit from all XMRV-associated illnesses being grouped under one heading -- for PR purposes, anyway. Imagine if (taking a wild leap into fantasy land), ME, fibromyalgia, MS, chronic Lyme disease were all considered under the umbrella heading HGRAD (Human Gamma Retrovirus Associated Disease). What a powerful force we could be! Our individual symptoms could still be described as subsets, when needed, per Caladonia's suggestion: HGR-associated prostate cancer, HGR-associated neurological dysfunction, HGR-associated endocrine disorder. The associated part could describe symptom sets and any one person might have multiple associated conditions.

My suggestion:
For current XMRV+ people
One is infected with HGR.
One might develop HGRD (Human Gamma Retrovirus Disease --- who needs "associated", and "haggard" is such an appropriate pronunciation)

For current HIV+ people
One is infected with HLR (or HLV)
One might develop HLRD (or HLVD)

Easy, consistent, and future patients get to lose the CFS-associated and AIDS-associated negative baggage.

 

[eric_s]

About 13 years ago, the girl I was in a relationship with asked me to take a HIV test. I discussed it with my GP, and she said just taking the test could have ramifications with future life insurance policies, especially if your positive.

Seriously ? Is that doctor crazy?? She should be happy, she has such responsible patients and congratulate you . I think that's exactly what they have been telling people for 20 or so years now, that they should do?! Now that's a doctor where they should look at wheter she should have a licence.