The Other Spanish XMRV Study (IrsiCaixa) - Stalled - Questions & Answers Thread

eric_s

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Hi all

It seems there are many questions regarding those studies. It's a good thing people are interested and i hope many can make the decision to help a bit.

Clara Valverde, the president of Liga SFC, who helped initiate and fund the studies, has said that people can write her with questions.

I thought it might be a good idea to have a thread where questions and anwers can be posted, so that she doesn't have to answer the same questions many times. She has ME/CFS herself, so you can all imagine that it's probably quite stressful to do that job.

When asking her a question, please ask wheter she agrees with you posting her answer here on Phoenix Rising, so other people can read it (and don't have to ask the same question again).

Here are her contact details:

Clara Valverde
formacionsalud(at)hotmail.com
President Liga SFC
www.ligasfc.org
and International Relations for ASSSEM
www.asssem.org

Clara Valverde speaks English, as she is Canadian (probably Spanish as well, but i'm not 100% sure).
 

eric_s

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Q: Will there be a presentation? [This is referring to the already completed studies]

A: They will make the official presentation at CROI in Boston. http://retroconference.org/2011/



Q: Will all the money donated to the accounts mentioned with the text "Estudio XMRV SFC" go to XMRV research?

A: Some people have asked us if the donation money to the account "XMRV en SFC" goes all to ME/CFS research. The answer is YES. ("SFC" is ME/CFS in Spanish).
 

eric_s

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Here is some further info, it's second hand though, not from Clara Valverde directly:

The first pilot study was done with ONLY 12 patients, and now they wanted to increase the sample of patients to make it statistically significant and move on pathology to find out what XMRV is doing in the immune system of these patients where they already found diferent immune abnormalities: CD57 low in NK cells, CD5 bright high in CD8 cells, etc...If the study is accomplished they will publish it yes, probably in CROI next year or somewhere else...I asked them to include paypal, but they told me that the Irsi Caixa foundation does not approve paypal for security reasons, you can ask Judy on the reliability of these guys, they are on our side...