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Spanish XMRV researchers to report Dec 9 on immune dysfunction

Rita

Senior Member
Messages
235
I want to say that the study of Irsi Caixa, Hospital Germans Tries i Pujol, Badalona, Spain, was supported in part by CFS patients, and in part by a foundation of a bank, not by health authorities, who denied any help. This hospital is highly specialized in AIDS and infectious diseases and has help from the Melissa and Bill Gates Foundation to study malaria.
Now they want to continue to study more thoroughly the disease but can not afford to continue. You know, CFS is not a disease of concern to health authorities, not even knowing that it can be contagious.There is a bank account where Spanish CFS have donated money to help the first inquiry and I will hang here if some european CFS wants to contribute

n cta: 2100 0325 41 02001422 05
Concepto: ESTUDIO XMRV SFC
Beneficiario: Fundacin IRSICAIXA
Direccin: Crta de Canyet s/n 08916 Badalona (Barcelona)Spain
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I think would be good if you can provide an IBAN and BIC, then it's much easier. The account number doesn't look like an IBAN to me, length is about the same, but there should be 2 letters at the beginning. And please post here, as soon as there is information about that event in english. Thanks a lot.
 

Rita

Senior Member
Messages
235
I think would be good if you can provide an IBAN and BIC, then it's much easier. The account number doesn't look like an IBAN to me, length is about the same, but there should be 2 letters at the beginning. And please post here, as soon as there is information about that event in english. Thanks a lot.

I'll have to consult with IrsiCaixa to ask the IBAN and BIC. Today or tomorrow is not possible either.
My English is very naive, I will try to highlight the most important findings about immune deficiencies have been found in Irsi Caixa, albeit with the help of google translator

Take care ,and good Christmas for everybody
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
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.

Whoa, whoa, whoa. Hold on there. Nobody but nobody has confirmed or proved the human pathology of XMRV/MLVs. That's getting way ahead of where we are. There are a lot of plausible and testable hypotheses around about how the MLVs might cause disease, but remember the words from the addendum to the Lombardi paper - not even the WPI is saying they've proven anything yet about pathogenesis.

We have not claimed in our October 2009 publication or in other venues that XMRV is the cause of CFS, only that its detection in the majority of our ME/CFS patient cohort allows us to form a testable hypothesis as to an infectious basis for this devastating disease.

But we're not there yet. Nobody has actually found the smoking gun yet - just lots and lots of evidence that strongly suggests it is in there somewhere.
 

aruschima

I know nothing
Messages
113
Location
Global
Hi Eric,

Just send you a private message.
Good journey and fun in Barcelona. Hope you can keep us updated, since all the action seems to be there:D
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I was a bit impatient :tongue: and got that data

IBAN: ES2721000325410200142205
BIC: CAIXESBB

That should be enough for a transfer within Europe.

Beneficiary: Fundacin IRSICAIXA
Reference: ESTUDIO XMRV SFC
Address: Crta de Canyet s/n, 08916 Badalona (Barcelona), Spain

Can't guarantee it's correct, but 2 calculators returned the same IBAN, so i guess it's right.
 

serg1942

Senior Member
Messages
543
Location
Spain
Hi guys,

***We were told that the whole conference was going to be recorded, so I expect we can watch it entirely soonAnyway, from the 5 available videos, I have taken notes of the important points:

***Below is a summary of this talk that was published in Facebook. I comment on some things, adding information from the video (my comments are in asterisks),

In my opinion, I should say that they saw that things are happening in the immune system of CFS patients, but what they found can not explain the illness, more research is needed.


The same goes for XMRV, they have taken a first step, but they do not yet have the technique for XMRV detection... they have detected sequences of the virus in healthy donors, CFS patients and HIV patients. They used 3 different techniques, and only 2 subjects of the 20 were XMRV+, one CFS patients and one healthy donor. More in detail using one of the three techniques they saw:



4 CFS XMRV+ out of 11 (36%) 2 Healthy donors our of 5 (40%) 1 HIV patients out of 4 (25%)

***They found a total of 7 XMRV+ patients out of 11 PWCs studied, putting together all the different techniques they used. This was published in the 1rt workshop on XMRV last September.


Because their study is relatively small, this statistics are not relevant, but the immune profile of all the CFS patients showed the same abnormalities, which reassure them in the patients selection.

***Specially the low number of CD57+, a subset of NK cells.

They explained that in order to detect XMRV they infected the cells with EBV in order to inmortalize B cells, and because they are a target for XMRV, they tried to see if in those B cells purified and expanded they were able to see XMRV. When they tried to look for XMRVin PMCs they were not able to find it with a DNA test, only when they looked in the B cells specifiaclly they did find it, although their results were not concordant with the three different techniques used. But they did find it in 7 samples, and in order to double check that what they found was XMRV they sequenced the virus and then they were sure that it was XMRV.

*** They ensured that what they found was XMRV DNA, because the Gag gene had the specific 21p deletion (I am writing this from memory...).



They have also found abnormalities in the immune system, but those abnormalities could not explain per se the CFS illness, they only point out that potentially there is an immune dysfunction, and potentially caused by XMRV, but nothing has yet been demonstrated. They need funding for advancing on their studies.


1) The percentage of IgG+ Antibody Secreting Cells is reduced in blood of CFS patients compared to healthy donors.

*** They reached this conclusion by measuring the specific b cells that had to secrete IgGs.


2) The percentage of CD57+ in CD56+ CD16+ NK cells is reduced in patients compared to Healthy Donors.

***Curiously, they found normal NK function and high activation of overall NK cellsThey think this could be compensating for the low CD57+, but they need to study this question deeper.


3) The percentage of CD5 bright cells is increased in CD8 T cells which could suggest an anergic state of this cell subset and "potentially" be related to an impaired control of viral infections.

***They also say in the video that the reproduction of CD4 and to some extent the reproduction of CD8, were found to be slower than normal, while in HIV is found the opposite, one of the reasons for the destructions of the immune system in HIV infection.

*** Important to note that they cultivated cells in tonsil cells, and they didnt find any XMRV+ patient, out of the 11 studied. They said weeks ago that this could mean the virus wasnt active in those patients, as they found XMRV DNA by PCR, but they couldnt cultivate it. Worth noting here that so far the studies that has found XMRV by culture used cancer cell lines, not tonsil cells --cancer cells are more prone to be infected---Also, they said that maybe they should have cultivated the cells more timeI think this may be related to lack of funds

*** They say that they were unable to find XMRV in PMCs, and that this is the mistake most of the negative studies made. They found XMRV by looking in other cells (B cells), afterwards.

*** Rita is right. They carried out this study thanks to private funds, mostly coming from patients. Now, they want to continue studying, but public money was denied to them (ironically, funds were granted to Carlos III hospital in Madrid, where so far they have not detected ANY XMRV+ out of houndred PWCs!).

*** I wish this team is able to continue working on this, as their next objective is to isolate the virus and study its pathogenesisThis is what we need!


In order to donate to Irsi Caixa to advance in their studies you can transfer your donation to this account:


Account number: 2100 0325 41 02001422 05

Concept: ESTUDIO XMRV SFC

Beneficiary: Fundacin IRSICAIXA

Address: Crta de Canyet s/n 08916 Badalona (Barcelona)

Contact person: Lourdes Grau (lgrau@irsicaixa.es)


***If you have any doubt from the video, Id be happy to solve it if I can.

***Best,
Sergio
 

aruschima

I know nothing
Messages
113
Location
Global
Thanks for translation

Lot of info seems to contradictory and confusing. I guess we have to wait until they come out with the ASSAM paper in English.

Funding problems :(, seems the same all over.

What we have to do, rob a bank ?:Sign Help::Sign Please::cool:;)
 

Rita

Senior Member
Messages
235
If you rob a bank you have bedding, food,for free. If you have CFS they give you nothing....
 
Messages
13
Location
madrid
Latest summary from XMRV and Immune System of CFS patients in Barcelona by Irsi Caixa
Presentation of Dr. Juli Blanco

With regard to the detection of retrovirus XMRV, Dr. Juli Blanco words were prudent denoting the wisdom of scientists.
Basically They confirm that YES, they have found XMRV, although depending on the technique applied, they have found it in 7, 3 and two patients respectively.
The worst part is that the lack of standardized methods for the test, as Dr. Blanco himself commented, that is the reason of disagreements between the different scientists who are lagging behind XMRV.

Obviously, if there is no funding, no research, as is happening to themselves as well, Can Ruti researchers said.
They have been able to not only detect XMRV sequences in patients with ME / CFS, AIDS patients and healthy people, but the Dr. Cabrera has been able to infect, in the laboratory, human tonsil tissue. It is therefore, an infectious virus for the human species. Nonetheless, with this study so limited in funding and number of participants, there are many things to know:

- How is transmitted (although I would think that like other retroviruses, blood, semen, fluids)
- If the in vitro antiretrovirals used (AZT, Ral, Ten) will also work in vivo (in people)
- If Antiretrovirals will work on a virus, that we still do not know if it acts like HIV (ie infecting cell and destroy it) or as the HTLV (another retrovirus that immortalizes cells and provoque cancer).

In terms of infectiousness and prophylactic measures, He recommends the use of condoms during casual encounters, which LigaSFC and ASSSEM recommend that prophylaxis in all cases.

As for the immune system of patients with CFS / ME
Well, we knew this would be the "hot potato".
Not surprisingly, the 9 ASSSEM components, some of which are also part of the LigaSFC as its president and vice president, Ldia Moterde, came with T-shirts that said: SFC = IMMUNODEFICIENCY T8

ALL THE IMMUNE CELLS show abnormalities (B Cel, T and NK Cel)

- B cells are found in small amounts as well as the IgG they produce. He details even more saying that both IgG's cells are found in small amounts those that could be produced and those being produced at that moment.

- The NK cells (NK or Natural Killer Cells). They maintain baseline function unaltered, ie perform their function of cell destruction. Nonetheless there are two abnormalities in patients with CFS / ME: A degree of activation slightly above normal and A marked reduction of CD57 in the 11 patients analyzed, so that could be used as a marker to validate these patients, according to Dr. Blanco.

- T cells, or CD4 (Or T4) are divided to a slower pace (unlike the case of HIV). The CD 8 (T8 or those of T) have two abnormalities: they also divided more slowly (although not as much as CD4) and they present in a very high quantity a marker called CD5 Bright whose presence indicates ANERGY, which is understood as a lack of response by these T cells in the presence of pathogens and / or uncontrolled growth of cells (cancer).

Therefore these would be the first biomarkers for CFS / ME:
1.-Marked decrease in CD 57 in NK
2.-Pattern of anergy with high amount of CD5 Bright on CD8 (T8)

Source: LigaSFC: http://ligasfc.org/index.php?name=News&file=article&sid=379

If you want to support Irsi Caixa progress in their studies XMRV and the immune system of patients with CFS can make a donation to the following account:

Account No: 2100 0325 05 41 02001422
Concept: SFC XMRV STUDY
Beneficiary: Foundation IrsiCaixa
Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
Contact: Lourdes Grau lgrau@irsicaixa.es


The Ministry has denied Irsi Caixa Grant to further investigate the XMRV and the damage it can cause the immune system, we ask you to sign these petitions to the Government:

http://actuable.es/peticiones/pedimos-al-gobierno-financiar-estudios-el-nuevo-retrovirus
http://www.petitionbuzz.com/petitions/xmrv
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Latest summary from XMRV and Immune System of CFS patients in Barcelona by Irsi Caixa
Presentation of Dr. Juli Blanco

With regard to the detection of retrovirus XMRV, Dr. Juli Blanco words were prudent denoting the wisdom of scientists.
Basically They confirm that YES, they have found XMRV, although depending on the technique applied, they have found it in 7, 3 and two patients respectively.
The worst part is that the lack of standardized methods for the test, as Dr. Blanco himself commented, that is the reason of disagreements between the different scientists who are lagging behind XMRV.

Obviously, if there is no funding, no research, as is happening to themselves as well, Can Ruti researchers said.
They have been able to not only detect XMRV sequences in patients with ME / CFS, AIDS patients and healthy people, but the Dr. Cabrera has been able to infect, in the laboratory, human tonsil tissue. It is therefore, an infectious virus for the human species. Nonetheless, with this study so limited in funding and number of participants, there are many things to know:

- How is transmitted (although I would think that like other retroviruses, blood, semen, fluids)
- If the in vitro antiretrovirals used (AZT, Ral, Ten) will also work in vivo (in people)
- If Antiretrovirals will work on a virus, that we still do not know if it acts like HIV (ie infecting cell and destroy it) or as the HTLV (another retrovirus that immortalizes cells and provoque cancer).

In terms of infectiousness and prophylactic measures, He recommends the use of condoms during casual encounters, which LigaSFC and ASSSEM recommend that prophylaxis in all cases.

As for the immune system of patients with CFS / ME
Well, we knew this would be the "hot potato".
Not surprisingly, the 9 ASSSEM components, some of which are also part of the LigaSFC as its president and vice president, Ldia Moterde, came with T-shirts that said: SFC = IMMUNODEFICIENCY T8

ALL THE IMMUNE CELLS show abnormalities (B Cel, T and NK Cel)

- B cells are found in small amounts as well as the IgG they produce. He details even more saying that both IgG's cells are found in small amounts those that could be produced and those being produced at that moment.

- The NK cells (NK or Natural Killer Cells). They maintain baseline function unaltered, ie perform their function of cell destruction. Nonetheless there are two abnormalities in patients with CFS / ME: A degree of activation slightly above normal and A marked reduction of CD57 in the 11 patients analyzed, so that could be used as a marker to validate these patients, according to Dr. Blanco.

- T cells, or CD4 (Or T4) are divided to a slower pace (unlike the case of HIV). The CD 8 (T8 or those of T) have two abnormalities: they also divided more slowly (although not as much as CD4) and they present in a very high quantity a marker called CD5 Bright whose presence indicates ANERGY, which is understood as a lack of response by these T cells in the presence of pathogens and / or uncontrolled growth of cells (cancer).

Therefore these would be the first biomarkers for CFS / ME:
1.-Marked decrease in CD 57 in NK
2.-Pattern of anergy with high amount of CD5 Bright on CD8 (T8)

Source: LigaSFC: http://ligasfc.org/index.php?name=News&file=article&sid=379

If you want to support Irsi Caixa progress in their studies XMRV and the immune system of patients with CFS can make a donation to the following account:

Account No: 2100 0325 05 41 02001422
Concept: SFC XMRV STUDY
Beneficiary: Foundation IrsiCaixa
Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
Contact: Lourdes Grau lgrau@irsicaixa.es


The Ministry has denied Irsi Caixa Grant to further investigate the XMRV and the damage it can cause the immune system, we ask you to sign these petitions to the Government:

http://actuable.es/peticiones/pedimos-al-gobierno-financiar-estudios-el-nuevo-retrovirus
http://www.petitionbuzz.com/petitions/xmrv

Wow! Some good info here XAND, have any of the papers themselves been published do you know???
 
Messages
19
Thank you for sharing this infomation with us.. Sounds like they are doing some top notch investigations there. If anyone knows anyone close to this research group then maybe they can ask them to set up a paypal or some way to donate that is a bit easier.