Discussion in 'XMRV Research and Replication Studies' started by Cort, Feb 16, 2011.
From Clara Valverde
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?
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.
Yeah... but it sounded like they'd already completed some pretty significant research. Surely they should be able to get some of that published?
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?
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?
and you can't say "funding" !!!!!!!!!!!!!
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.
sherb....... you may be on to something there'
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.
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:
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.
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 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.
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.
I'll paste some information from the Wikipedia article, because some people might not click the link and read it there:
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):
And here are transpcripts of the presentation:
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:
Interesting how they shut down the study as soon as they found the virus.
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.
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.
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