NATIONAL RETROVIRUS REGISTRY. Does your country have one? Spain does!

[parvofighter]

70 Retrovirology specialists meet on national retrovirus registry (AND XMRV) in Spain
Very cool news from Spain. Does your country have a national retrovirus registry? Can we help replicate this model in other countries?

"XX Meeting of the Spanish group for the study of HIV-2 and HTLV" at http://translate.google.ca/translat...arch?q=xmrv&hl=en&lr=&tbo=p&num=100&tbs=qdr:d It appears to have happened 3 days ago, December 16th, in Spain at the Hospital Carlos III in Madrid.

"Hospital Carlos III of Madrid will host the Twentieth Meeting of the Spanish group for the study of HIV-2 and HTLV.
Some 70 specialists meet to share current data from the national registry of cases of infection
with these retroviruses, other than classic AIDS virus.
In this new edition, in addition to HIV-2 subtypes and HTLV 1 and 2, will focus a presentation by Dr. Vicente Soriano
to the latest information and recorded cases of the new retrovirus XMRV, "uncovered" in October in the journal Science."​

The meeting program is here: http://translate.google.ca/translat...arch?q=xmrv&hl=en&lr=&tbo=p&num=100&tbs=qdr:d It lists all the presenters - what I imagine might be a "Who's Who" list of the prominent retrovirologists in Spain.

This is awesome. First 75 retrovirologists convene @ the Cleveland Clinic. Then 70 retrovirus specialists convene in Spain. And Spain has a national registry for retroviral infections other than HIV?! I wonder if these specialists/retrovirologists can get Spanish ME/CFS patients on the registry asap? This might be a great example to share within your own country, help speed up XMRV action.

@Sergio & others, are you able to tell us more?

OK fellow Canucks, we need to get similar action happening in Canada!

 

[Rita]

I only see in this news one day meeting of viral specialists.
By the moment, spanish HIV specialists or infectious specialists don t want to take care of CFS patients.
We have three CFS specialists for 50 milion people ,but no one is treating with antivirals like Veltrex,the only are treating symptoms.

 

[Samuel]

The USA has an important blood repository

The USA has this.

It is imperative that we use it. We might need to get active politically to get it to be used and not have any of it be misused.

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

 

[parvofighter]

Thanks Samuel!

Wow, this is great Samuel. I totally agree that ME/CFS patients around the world need to become active (to the extent that each of us can) and take advantage of/connect with existing infrastructure and talent for retroviral infection. This could make our wait for appropriate XMRV diagnostics and therapy all the faster.

The USA has this. It is imperative that we use it. We might need to get active politically to get it to be used and not have any of it be misused.
http://en.wikipedia.org/wiki/Department_of_Defense_Serum_Repository

I took a look at your wikipedia link, and was interested to see that the U.S. Department of Defence Serum Repository began as an HTLV-III screening program. Get this:

"The DoDSR traces its origins to 1985 and the beginnings of the United States Armed Forces HIV screening program
(originally referred to as the HLTV-III screening program)..."​

(Not trying to be cute, but I think wiki did a misspell on that acronym - isn't it HTLV (Human T-lymphotrophic virus?), not HLTV? I also looked up HTLV on wikipedia, and here is what they said: http://en.wikipedia.org/wiki/Human_T-lymphotropic_virus

"
The terms "HTLV-III" and "HTLV-IV" have been used to describe recently characterized viruses. These viruses were discovered in 2005 in rural Cameroon, and were apparently transmitted from monkeys to hunters of monkeys through bites and scratches.
* HTLV-III is similar to STLV-III (Simian T-lymphotropic virus 3). Multiple strains have been identified.
The use of these names can cause some confusion, because the name HTLV-III was the former name
of HIV in early AIDS literature, but has since fallen out of use."​

OK, enough trivia. Good answers beg more questions!
1) Does Dr Klimas (who I understand already is under the umbrella of U.S. Veteran's Affairs?) and/or WPI have access to this serum repository?
2) Is there anyone with military connections who could find out more about whether this repository is aware of the XMRV finding? If so, can we find out what they are doing? and
3) What did you mean by getting involved and not having the serum repository be misused? Unforseen consequences? What might they be?

And Canadians - anyone have connections with or thoughts on how to attract the attention of the Department of National Defence, specifically the Medical Branch re: XMRV? Does our military have a similar serum repository?

Thanks!

 

[Samuel]

Scientific gold mine. Political land mine. Must be made honest.

By misused, I mean that some people might not want science to be done.

We can track the spread of any retrovirus that exists in serum through time. For example, we can find out if the proportion in healthy people has increased. We can also track other diseases. We can discover correlations to diseases that we have not even considered. We can track disease progression and maybe even transmission. Coinfections. Toxins.

This is a scientific gold mine, IMO.

There is potential for politics. Only we and the denialists know how hardball it can get. So only we can make the science honest. Now's our time, IMO.

 

[parvofighter]

Thanks Samuel

By misused, I mean that some people might not want science to be done.

Now THAT is a scary proposition. I totally agree with our community's need to keep the science honest. Thanks for your very helpful elaboration!

 

[XAND]

Regarding Spain and Carlos III on XMRV

70 Retrovirology specialists meet on national retrovirus registry (AND XMRV) in Spain
Very cool news from Spain. Does your country have a national retrovirus registry? Can we help replicate this model in other countries?

"XX Meeting of the Spanish group for the study of HIV-2 and HTLV" at http://translate.google.ca/translat...arch?q=xmrv&hl=en&lr=&tbo=p&num=100&tbs=qdr:d It appears to have happened 3 days ago, December 16th, in Spain at the Hospital Carlos III in Madrid.

"Hospital Carlos III of Madrid will host the Twentieth Meeting of the Spanish group for the study of HIV-2 and HTLV.
Some 70 specialists meet to share current data from the national registry of cases of infection
with these retroviruses, other than classic AIDS virus.
In this new edition, in addition to HIV-2 subtypes and HTLV 1 and 2, will focus a presentation by Dr. Vicente Soriano
to the latest information and recorded cases of the new retrovirus XMRV, "uncovered" in October in the journal Science."​

The meeting program is here: http://translate.google.ca/translat...arch?q=xmrv&hl=en&lr=&tbo=p&num=100&tbs=qdr:d It lists all the presenters - what I imagine might be a "Who's Who" list of the prominent retrovirologists in Spain.

This is awesome. First 75 retrovirologists convene @ the Cleveland Clinic. Then 70 retrovirus specialists convene in Spain. And Spain has a national registry for retroviral infections other than HIV?! I wonder if these specialists/retrovirologists can get Spanish ME/CFS patients on the registry asap? This might be a great example to share within your own country, help speed up XMRV action.

@Sergio & others, are you able to tell us more?

OK fellow Canucks, we need to get similar action happening in Canada!

Hi there everybody, I am not often here, but just wanted to clarify that the meeting on Carlos III was focused on HIV not on XMRV. And Vicente Soriano only talked 5 minutes on XMRV to introduce it without giving yet too much credit on its pathogenicity or transmission. Further studies are needed to confirm it He said. So do not that that in Spain is different than anywhere else... is a long road to get awareness on XMRV and CFS yet.