The Other Spanish XMRV Study - Stalled

[Cort]

From Clara Valverde

SUPPORT XMRV IN ME/CFS RESEARCH IN EUROPE!

The retrovirology researchers of Barcelonas IrsiCaixa lab, Dr Cecilia Cabrera and Dr Julian Blanco, who have been working on HIV with the Director of IrsiCaixa, world-renoun HIV researcher, Dr B Clotet, have concluded a study on the presence of retrovirus XMRV in patients with ME/CFS. They found the retrovirus (and this was presented at the first XMRV International meeting in September 2010 in the USA).

They also determined a pattern, in all patients with ME/CFS which consists of a clear dysregulation of the immune system: high levels of CD5 cells in the CD8 lymphocites and low levels of CD57 cells in the Natural Killer cells (NK), which puts in evidence the low activity of both types of cells in people with ME/CFS. These abnormal patterns would explain the health problems of people with ME/CFS, which include high levels of viral reactivation and of cancer. The team at IrsiCaixa have collaborated with Dr Judy Mikovits during their study.

Their research has now been stopped as they have been refused funding by the Spanish Ministry of Health.

We know that this research is very important for the future of diagnosis and treatment of ME/CFS patients. That is why we are asking for donations to continue this very important research.

Donations from inside Spain:

The IrsiCaixa lab bank account for the XMRV study in ME/CFS is:

2100 0325 41 02001422 05

Donations from outside SpainInternational Transfers)

IBAN: ES58 210003254102001239-93
SWIFT CAIX ESBBXXX

Concept: ESTUDIO XMRV SFC
Beneficiary: Fundacin IRSICAIXA
Address: Crta de Canyet s/n 08916 Badalona (Barcelona), Spain
Contact person (for receipts): Lourdes Grau: lgrau@irsicaixa.es

 

[Esther12]

Surely they've already got enough to get a paper out!

What's going on here? Even if the bigger journals are being extra cautious at the moment there should be respectable, smaller journals keen to publish a well done study like this. With that work published, wouldn't it be easier to get further funding?

Is it really that ALL journals are unwilling to go near postive XMRV stuff right now? Or do they not have enough evidence to publish right now? Anyone got any idea what's going on?

 

[max]

Their research has now been stopped as they have been refused funding by the Spanish Ministry of Health.

...... nothing to do with medical journals - they go where they're told.

The government stopped it.

 

[Esther12]

Yeah... but it sounded like they'd already completed some pretty significant research. Surely they should be able to get some of that published?

 

[LJS]

Is there a way to get more information form the people behind this study on what is going on? Has the study presented been completed? If so why is it not published? If not what is needed to get this study published?

 

[max]

they can't publish part of a study - it is incomplete - how can any conclusions be drawn? How can it be peer reviewed if half the data is missing.

The study was stopped/halted/prevented from advancement by the government.

Why was the research stopped?

 

[max]

and you can't say "funding" !!!!!!!!!!!!!

 

[Sherby]

Thanks Cort this is ridiculous , I know in the back of our minds we are all starting to realize that the nearer we get to the evidence and understanding of the biology,
the governmental doors are being firmly shut on anyone who dares to get to the truth. How many country's are going to behave like this.
I wonder what's going on behind the scene that we will never hear about ? I know this is a mature forum but shortly we will be talking conspiracy.

 

[max]

mmmm

sherb....... you may be on to something there'

yup

even if it is a mature forum - that doesn't mean we can't think about the possibility that there may be 'purpose' behind government decision making.

 

[eric_s]

Is there a way to get more information form the people behind this study on what is going on? Has the study presented been completed? If so why is it not published? If not what is needed to get this study published?

I have contacted IrsiCaixa and asked some questions similar to those. Hopefully they will answer.
I also think this is very important research and probably the best we have in Europe at the moment, so it would be great if they can continue. I think it would be interesting to know exactly what their situation is, how much they need and what they plan to do, given more funding.

Here's a short description of what IrsiCaixa is:

The IrsiCaixa Institute for AIDS Research is an internationally-recognized oraganization with the aim of contributing to improving understanding of the disease, its prevention and treatments of HIV and AIDS with the ultimate goal of eradicating the epidemic.
It was founded in 1995 as a prvate non-profit making foundation by the Fundaci La Caixa and the Department of Health of the autonomous Catalan government, and is located at the Germans Triuas i Pujol Hospital in Badalona.

Directed by Dr Bonaventura Clotet, IrsiCaixa consists of over 50 researchers who focus their activities on basic research into understanding HIV infection mechanisms and developing new therapies and vaccines. At the same time, the foundation participates in clinical studies to evaluate new therapeutic strategies, and cooperate with developing countries, collaborating in the fight against the pandemic on a global scale.

The IrsiCaixa Institute for AIDS Research IRSI Caixa works alongside the most prestigious international research centres, and its publications are among those with the most impact in their field.

Source: http://www.irsicaixa.org/en/presentation

I think so far they have done the XMRV/CFS research out of their normal budget and helped with some donations, because they have personal contacts to people in Liga SFC, but XMRV is not what they have been founded for. So i understand they need additional funds. The fact that the central government does not provide funding does of course not prohibit them from continuing, but they need to take the money from somewhere, i guess.
So i think it's important we can get as much information as possible, to convince people to donate. I have already donated and will give more in the future, but the more we know, the better.

 

[HowToEscape?]

Is there any way for a non-scientist to know that is a good place to donate? I'd be happy to, but sending money based on a few internet posts would be lazy on my part. Anyone hear know of or about this institute?

 

[omerbasket]

I think that they wouldn't like to publish it right now because they tested a very low number of ME/CFS patients and the conclusions drawn from the results might not be correct.
However, given the fact they they found XMRV in ME/CFS patients, I think that if they wouldn't be given a new funding soon, they should publish their study, in order to make the picture more even (against the negative studies) and to make it easier for other researchers to get fundings in order to study XMRV and it's connection with ME/CFS.

 

[eric_s]

Is there any way for a non-scientist to know that is a good place to donate? I'd be happy to, but sending money based on a few internet posts would be lazy on my part. Anyone hear know of or about this institute?

I think the institute is highly trustworthy and probably an almost ideal place to do research into a retrovirus. Read a bit through their website, it's available in English too. http://www.irsicaixa.org/en/home

They were founded by the government of Catalunya (a Spanish "state", Spain is a federal state) and La Caixa Foundation. La Caixa is a big Spanish bank http://en.wikipedia.org/wiki/La_Caixa and i think it's the tradition in Spain that that type of bank (caja, savings bank) also does social projects. There's a lot of information in this Wikipedia article.

I hope they can provide some more information about what will happen with donated money, but it's certainly a good place to donate to.

 

[eric_s]

I'll paste some information from the Wikipedia article, because some people might not click the link and read it there:

"La Caixa", formally Caixa d'Estalvis i Pensions de Barcelona (Spanish: Caja de Ahorros y Pensiones de Barcelona), is currently Europe’s leading savings bank and Spain's third largest financial institution, with a network of over 5,500 branches, more than 8,100 ATMs, a workforce in excess of 27,000 and more than 10.7 million customers.

Due to its nonprofit status, the bank controls the largest charitable foundation in Spain, and one of the largest in the world. This foundation makes major investments in such public welfare causes as care of the aged and infants, curing Alzheimer's, technologically advanced classrooms, old-age centers, and the like.

Through its Social Programme, “la Caixa” funds social, environmental and scientific, cultural and research programmes. The ”la Caixa” Foundation is Spain’s leading private foundation, the second in Europe and the fifth in the world in terms of budgetary volume (550 million Euro for 2008), according to data from the European Foundation.

In 2005, the bank received the Gold Medal of the Generalitat de Catalunya [the Government of the "state" of Catalonia] for these efforts.

 

[eric_s]

Teams from IrsiCaixa Foundation have presented their work at the 1st International XMRV Workshop in September 2010. The material can be found here http://regist2.virology-education.com/abstractbook/2010_8.pdf.

It's the abstracts P_05 on page 25, P_07 on page 26 and P_18 on page 35.

You can see Dr. Blanco present some of the work here (it's in Spanish though):

http://www.youtube.com/watch?v=26eIa8LZyyE&NR=1
http://www.youtube.com/watch?v=5xoUK4dS0YI&feature=related
http://www.youtube.com/watch?v=xFIZ3zUq36A&feature=related
http://www.youtube.com/watch?v=RS43445DV8k&feature=related
http://www.youtube.com/watch?v=9WK4exivsrc&feature=related

And here are transpcripts of the presentation:
http://forums.aboutmecfs.org/showth...ne-dysfunction&p=142841&viewfull=1#post142841
http://forums.aboutmecfs.org/showth...ne-dysfunction&p=143033&viewfull=1#post143033

 

[Nielk]

Their research has now been stopped as they have been refused funding by the Spanish Ministry of Health.

...... nothing to do with medical journals - they go where they're told.

The government stopped it.

What is it with all these countries???????
Why do they pick us to be the underdog who doesn't warrant ANYTHING.
We are already invisible, now they make believe we don't exist at all!!!!!!!!!!!

I'm really enraged:headache:

 

[Tia]

Interesting how they shut down the study as soon as they found the virus.

 

[HowToEscape?]

re post 14 -- thanks that's encouraging. Now to find a link to donate, that should be simple.

 

[eric_s]

re post 14 -- thanks that's encouraging. Now to find a link to donate, that should be simple.

You're welcome. If you have any further questions, i'll try to answer them.

I'm also in contact with Clara Valverde, the president of Liga SFC (Catalonian CFS organisation, http://www.ligasfc.org/), who has made the call posted in post 1, but she does not work for IrsiCaixa herself, so she doesn't know everything. She knows some people there personally though, as she used to work in the health sector as well (or still does, as much as ME/CFS allows, i don't know). I think this personal contact is what initiated the XMRV studies at IrsiCaixa.

The information needed to make a donation by bank transfer is in post no. 1, the IBAN number and BIC code.

If people prefer to donate by credit card, it would be possible to set up a Facebook cause. This is a safe way to donate, since it is done through Causes (www.causes.com). I don't have a Facebook account, so i can't do it at this moment.

 

[eric_s]

Interesting how they shut down the study as soon as they found the virus.

I don't think it's correct to say that, because it's up to IrsiCaixa to decide what they will do. They are a private foundation, even though one of the founders was the Catalonian government. I don't know who is in charge though. Of course they need money to do something. So far, i don't think they got any government grants for the XMRV studies, they just did them anyway, so the refusal to fund the studies is not "shutting them down", it's just keeping up the status quo (which is of course not better, it means zero Euros for that purpose). But if they want to do that research they can do it, given they can finance it.