Spanish XMRV researchers to report Dec 9 on immune dysfunction

[aruschima]

George, I thought you did.


I have to learn Spanish now

 

[eric_s]

I don't speak Spanish very well, but luckily this guy in the first video speaks very clearly and actually in quite a simple and well understandable way, so i manage to get most of it, i think. I like his style a lot, seems trustworthy to me.

I know there are some native Spanish speakers on the forum, so i hope they will be able to provide a transcript. Or it will pop up on XMRV global action, the Liga SFC site or anywhere else. I will have to travel the day after tomorrow and tomorrow i will have to get a lot of stuff done for that.

But i might try to mention some stuff i find interesting, when watching the video. I've just started and what i really liked is that he said that they couldn't find XMRV at first, with the "traditional" method, and then he explains why and will probably go on to say what they then changed to get to be able to find it. But i have to watch it first, i have now stopped the video.

Really hope some Spanish people here will comment.

 

[eric_s]

If i understand correctly, he says they have sequenced it, and that that means, it's really XMRV. Now, how is that???!!!! Very cool...

Without any guarantee, because i really don't speak Spanish too well.

 

[eric_s]

Basically, part one is about finding XMRV and parts 2 and 3 (not fully through yet) seem to be about the immune system.
He says that what they have found is that in PWCs there's a deficit in the production of IgC antibodies.
In the first part, i think he said that they studied 11 PWCs, not totally sure though. I don't know if the findings about the immune system come from the same group ("only" 11).

 

[eric_s]

They have also found differences when looking at NK cells. And yes, it seems there were 11 PWCs they have been looking at, for all they have studied.
What i like a lot, is that he very clearly says what they have found and then also that they don't know yet, what causes this, and that they have to go further to find that out.
I think this guy is really good... the sort of people we need.

 

[George]

Whooohoo Thanks for taking the time to translate this eric_s. It's very kind of you.

 

[jackson]

"He says that what they have found is that in PWCs there's a deficit in the production of IgC antibodies"

Do you think he might have said IgG? There have been reports of IgG subclass deficiencies... but often thought of as sub-clinical.

 

[eric_s]

You're welcome! :Retro smile: I might try to make a transcript tomorrow, but i hope someone else will do it. I will have to go to the airport, pack my stuff, send things home, make plans for my trip and should try to get some other work done, as well. Today i actually touched the wall of a tunnel while driving , this has never happened to me before. Strangely there was no damage to the car. I should get some more sleep..
I'm pretty sure we will see more from that group in Spain (i think it's IrsiCaixa).

 

[eric_s]

Yes, probably he said IgG. I understood IgC, but the sound is not very clear at this point, and since IgC antibodies don't seem to exist (did a quick google search just now), i guess it's IgG.

What i also like, i think he said they want to isolate infectious viruses to find out how the virus replicates and what it does to the [immune?] system.

 

[George]

Take care of yourself Eric_s, you're a valued member of the community. No more tunnel kissing (you have no ideal who else has been kissin' them walls, grins) Take care and I'm sure we will get the translation from one of our spanish speakers soon enough!.

(tail wags and slobbler kisses from the George dog, now see that's better than a tunnel any day, Grins)

 

[eric_s]

Hehehe, ok...

 

[jackson]

The good thing is that there are so many legit virologist and immunologist involved now that whatever the verdict turns out to be..it will probably actually be the truth... I just hope when/if they discover XMRV is not the "be all" for M.E. that all these talented people and $$ don't fade out like they did after the last retroviral detection of the early 90s.

Re: IgG: Thanks for the follow up. I would guess its IgG and probably a subclass within IgG but with science ever evolving its hard to know... they could have renamed something IgC.

Yes, probably he said IgG. I understood IgC, but the sound is not very clear at this point, and since IgC antibodies don't seem to exist (did a quick google search just now), i guess it's IgG.

What i also like, i think he said they want to isolate infectious viruses to find out how the virus replicates and what it does to the [immune?] system.

 

[aruschima]

Yes, Eric, no more tunnel kissing ! George is right, drive save and keep the brain action focused on driving while driving. Thanks for the quick update .

 

[eric_s]

The good thing is that there are so many legit virologist and immunologist involved now that whatever the verdict turns out to be..it will probably actually be the truth... I just hope when/if they discover XMRV is not the "be all" for M.E. that all these talented people and $$ don't fade out like they did after the last retroviral detection of the early 90s.

Re: IgG: Thanks for the follow up. I would guess its IgG and probably a subclass within IgG but with science ever evolving its hard to know... they could have renamed something IgC.

Yes, i think no matter what happens, we will probably have to get active and make sure there's enough money in this research. I guess if XMRV is validated, there will be much more "government" money, but nevertheless, there can probably never be enough funds in something like this, so we should pour in as well.

I really think we should bring our full capacity into this. Like i said once or twice before. A couple of millions of people * 100 Euros or Dollars a year. We can do almost anything... We will have to start doing it. The big question is how to unite such a large number of people. Probably that's not possible and would also not be smart. But i think everybody shoud join a "legitimate" CFS org and all those orgs should be represented in some sort of forum or alliance. Then everybody would know which orgs they can trust and join. All those "member" orgs should encourage their members to make such a donation once a year (and maybe have it matched by friends and family, if possible) and then have some sort of list of institutions that do valuable research and funnel the money there. So people would have some choice. That's my idea... i think this is where we have to get.

 

[aruschima]

Eric, I just saw that you are also from Switzerland, although living in Asia.

About joining different groups;choices in Switzerland are limited, to say the least , and the one we have is an awful patient organisation linked to 2 psycho-somatic docs, who dictate the whole false information spread in our country and make wrong DX's ! I made the mistake and joined them years ago (before I knew anything about about CFS) and now I have a false diagnosis by a psychologist in my files, because he tricked me saying he has to file it under psycho-somatic for insurance purposes. (But he acted and spoke like he believes it is a real disease. A trick they use very often, facing "difficult" patients) Very difficult to get rid of that; which is now, since they are changing the disability system a night mare, although I was diagnosed in the mean time by Meirleier and have test which show all the biological immune abnormalities and activated viruses)

So much for joining groups.

 

[bullybeef]

More news from Spain: http://www.europapress.es/sociedad/...iones-vih-poco-frecuentes-20101211113932.html

Moreover, the new retrovirus XMRV seems to have originated in a leap from mouse to humans. Although at first XMRV infection was associated with prostate cancer and chronic fatigue syndrome, the results of international research groups have confirmed the role of human pathology XMRV permanently.

In any case, experts say there are "major problems" for the diagnosis of infection XMRV and still unaware of many aspects of the biology and transmission of this virus. However, fear has been raised in the United States have been excluded from blood donation in patients with chronic fatigue syndrome.

Does the statement in bold confirm XMRV is pathogenic?

BB

 

[Timaca]

Is there a way to read the above link in English?

 

[bullybeef]

I just used Google to translate the full article, Timaca. But you can paste and copy the full story onto Google translator here: http://translate.google.com/#auto|en|

Actually here's the full story in English:

A total of 1,144 persons with HIV infection rare

The National Register of infection detected in 2010, a total of 39 new cases in Spain of HIV-2, HTLV-1 and HTLV-2
MADRID, Dec. 11 (EUROPA PRESS) -

A total of 1,144 people in Spain suffer human retrovirus infections than HIV-1, the principal agent of AIDS, as HIV-2 or HTLV-1 and HTLV-2, which together have added 39 new cases 2010, according to latest figures of the Spanish Group for the study of human retrovirus infections than HIV-1, which celebrates the 15th December at the Hospital Carlos III of Madrid the XXI Annual Meeting.

The group belongs to a network of 40 hospitals and research centers belonging to the National Health System (SNS), under the direction of Dr. Vincent Soriano, Service of Infectious Diseases, Hospital Carlos III, responsible for the National Register of infection HIV-2 and HTLV since its creation in 1989.

According to this record, so far 244 cases have been reported in HIV-2 infection in Spain, of which 163 are men, mostly infected through heterosexual sex and 10 percent co-infected with HIV-1.

The new cases identified in 2010 added 24 and the majority are immigrants from sub-Saharan Africa. However, four new cases have been described in native Spanish, and although the majority of new cases were asymptomatic, two of which the presentation was a lymphoma.

For his part, during 2010 have been reported 13 new cases of HTLV-1 infection in Spain with the national registry collects 175 cases. All cases diagnosed in 2010 are immigrants from Latin America, except a Spanish woman who presented with tropical spastic paraparesis. One of their sexual partners was in Ecuador and, despite remaining asymptomatic, was diagnosed after infection with HTLV-1.

Regarding the number of cases of infection with HTLV-2 accumulated in Spain the figure is 725. It is mostly in Spanish, many with a history of using intravenous drugs. For this reason, experts point out, many are co-infected with HIV-1 and chronic hepatitis C sufferers.

In this regard, in 2010 identified two immigrants have been infected with HTLV-2, one from Ghana and one from Brazil. Both are asymptomatic and probably acquired the infection from sex, says the record.

MUTATIONS FROM PRIMATES AND MOUSE

As for the new human retrovirus described in recent years, experts agree that its origin is in jumping from species of primates to humans in West Africa. This would have described two new HTLV, called HTLV-3 and HTLV-4, and a new variant of HIV-1 group called P.

In Spain have not been identified so far infected with these retroviruses, mainly from Cameroon and neighboring countries, including Equatorial Guinea, a former Spanish colony.

Moreover, the new retrovirus XMRV seems to have originated in a leap from mouse to humans. Although at first XMRV infection was associated with prostate cancer and chronic fatigue syndrome, the results of international research groups have confirmed the role of human pathology XMRV permanently.

In any case, experts say there are "major problems" for the diagnosis of infection XMRV and still unaware of many aspects of the biology and transmission of this virus. However, fear has been raised in the United States have been excluded from blood donation in patients with chronic fatigue syndrome.

BREASTFEEDING, main route of transmission of HTLV

During the meeting also presented the results of epidemiological studies of HTLV made by the group in recent years. In the case of pregnant women, breastfeeding is the main route of HTLV transmission to the newborn.

In this regard, the HTLV test performance as evidence of "ante-natal" in more than 2,500 pregnant foreign residents in Spain has identified seven cases, all in Latin American pregnant. For this reason, experts stress that "it would be advisable to" make the HTLV test to all pregnant women from endemic areas, mainly in Latin America.

For two years, many blood centers have begun screening for HTLV in blood donors from endemic areas. In this way, and throughout 2010, Madrid have been identified in nine cases of infection with HTLV-1 and two HTLV-2.

For its part, the transfusion center of Catalonia, where it becomes the universal screening of all donors HTLV, only in 2010 have identified four cases of HTLV-1 infection in two Spanish and two Latin American as well A case of HTLV-2 infection.

 

[aruschima]

Bullybeef,

I will try to explain how i understood the release so far, but with caution, since the information is not properly translated yet and i just got snippets, also I have no scientific background, so my understanding is limited.

Ok, will try to put together the most important info i got out of this new snippets.

data collected in the study suggest that B cells may represent a reservoir for retrovirus XMRV and contribute to its pathogenicity. The data also show that the histological study of human lymphoid tissue is a suitable model for analyzing the pathogenesis of XMRV.

B cells: The human body makes millions of different types of B cells each day that circulate in the blood and lymphatic system performing the role of immune surveillance. Other functions for B cells include antigen presentation, cytokine production and lymphoid tissue organization.

Studies of B cells, T and NK cells suggests a (global) immune dysfunction of unknown cause as a potential contributor to the mechanism of development of CFS.

confirms the effectiveness of XMRV to infect in vitro and in vivo lymphocyte cells such as B lymphocytes As a new (hypothesis?), state that Epstein Barr virus act as a "gateway" of XMRV in B cells that act as "reservoir" (the place where most viruses accumulate) of the disease

(tonsil are lymphoepithelial tissues) ineresting is the part about EBV and the article i posted before on EBV and infected Bcells)

Putting it in context of XMRV infecting Bcell, (previous findings of low NKcell activity, abnormal cytokines) and finding XMRV in reservoirs like tonsils, spleen, ect. which are part of the lymphatic system, I think , would suggests dysfunctional immune system, specifically the lymphatic system, which is only a part of the whole immune system.

Uff, it is lot more difficult to explain than just having the information scattered in my brain ! I am not sure if this is the correct interpretation, but this is how i understood it.

Here is some interesting information about the Lymphoid Syste http://www.sinauer.com/pdf/nsp-immunity-1-6.pdf

 

[eric_s]

Eric, I just saw that you are also from Switzerland, although living in Asia.

About joining different groups;choices in Switzerland are limited, to say the least , and the one we have is an awful patient organisation linked to 2 psycho-somatic docs, who dictate the whole false information spread in our country and make wrong DX's ! I made the mistake and joined them years ago (before I knew anything about about CFS) and now I have a false diagnosis by a psychologist in my files, because he tricked me saying he has to file it under psycho-somatic for insurance purposes. (But he acted and spoke like he believes it is a real disease. A trick they use very often, facing "difficult" patients) Very difficult to get rid of that; which is now, since they are changing the disability system a night mare, although I was diagnosed in the mean time by Meirleier and have test which show all the biological immune abnormalities and activated viruses)

So much for joining groups.

OMG, Aruschima!!!! We will have to talk about that later, it's very interesting and it's cool to meet someone from Switzerand here (even though i prefer Canada as my home country, but i lived far more time in Switzerland). Just now i'm very stretched, i have to travel to Barcelona tomorrow and then catch the nighttrain. Now have to find a post office that's still open, so i can send a parcel and don't have to carry all the baggage...

When i had CFS for not very long, i attended a meeting of the swiss org. I never went again. Not because i didn't like the people there, but it was not what i was looking for. I don't want to talk about ME/CFS, i want to end it. I always liked the German org and the CAA better. Even though i know a lot of people have problems with them too. But their websites are far better and i like the CAA's motto.

I think i know one of the doctors you are reffering to. His name starts with a C ? I actually think he is quite ok, the best i've met. But all i do is talk to him on the phone every 6 months or so, to let him know what's up. And when i need a paper i have someone who can write it. Medically he never did anything for me and never claimed he could. But that's far better than what i've seen in other places :headache: But this will stop now... i'm pretty sure about that.
I know this doc does a lot of psychological stuff, but i never wished that. At least he says ME/CFS is physical and he fights for patients. He accepts your state, if you say how you feel, what you can and can't do, he accepts that and knows it's for real. That's not bad, for our standards . But so far he has not really made his mind up about XMRV yet. He says "let's wait until the pros have figured it out, i'm just a GP".

Luckily, i have avoided accepting a fake diagnosis. I know in Switzerland it's almost impossible to get social insurance money with the correct diagnosis in our case. It's horrible. A crime against the own people... When i quit the military because of CFS, i had to fight to get an acceptable code, in the end i got something like "other disease", something neutral and ok.

Returning to the orgs... I'm not a member of the Swiss one, because i didn't want to, but my parents are, and i think that's good, so the org gets some money. But now with XMRV things have changed a lot for me. And i plan to join them. Either that or start a new one or join a foreign or european or global one. One thing is for sure, if i join the Swiss one, it will have to change... lol, sorry if that sounds megalomaniac, i hope i'm not, but that's how i see it

Take care
Eric