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The Other Spanish XMRV Study - Stalled

Discussion in 'XMRV Research and Replication Studies' started by Cort, Feb 15, 2011.

  1. eric_s

    eric_s Senior Member

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    Hi

    Here is some more information. Clara Valverde has confirmed to me that all the money donated to the account mentioned in the first post, with the text "Estudio XMRV SFC", goes to XMRV research.

    Also IrsiCaixa researchers will make an official presentation at CROI in Boston soon (that conference starts late in February) http://retroconference.org/2011/
  2. Overstressed

    Overstressed Senior Member

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    Hi all,

    lately you read a lot on the forum to donate money here and there, and I was thinking of that, more particularly to whom we should donate. As it is now, and I think this is a huge thread to our health in general, is that the Pharma Industries sponsor research. That's a very bad thing, we know what HIV has brought us. No attempts to get rid of the virus, just to control it.

    Research in general is actually to gain knowledge. That's why you become a researcher, and not a doctor. They're goals are different. So, investing in those kinds of research will bring no benefits directly, unless you live a 100 years. Most of us, don't have the time, so we need to invest in translational research, where research is done with a clear goal in mind: how can we help the patient asap. Therefore, you need to have research going directly to the point, and translate this to drugs, asap.

    Now, the only institute planning to do this, at least that I know of, is the WPI. If there are any others, we should list them here. To my humble opinion, that's we way we need to invest, because we will benefit of it. In all other cases, the researcher will benefit. KDM is also doing some kind of translational research.

    This has nothing much to do with the Spanish study in this topic, but is more general, and the admin can maybe move my post to a more appropriate place.

    But it's something to think of...

    OS.
  3. eric_s

    eric_s Senior Member

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    I bet if anyone on this planet knew how to eliminate a retrovirus from the body there would be a pharma company that would love to develop a drug that does that...

    This is copied from the IrsiCaixa website:
    I think IrsiCaixa do exactly the type of research we need, for HIV, so i guess they are a good choice to try to do the same for XMRV.

    I agree the WPI is very good and to me they are number 1, but it's good to not have only one center. I think it would be great to keep up this research in Europe, so that it can spread from IrsiCaixa to other European groups.

    We need doctors too, but KDM and the American CFS docs have been working for a very long time and unfortunately they can't help everybody. How should they be able to, if the underlying problem is not known and understood. I'm no scientist or MD but this is my take...
  4. aruschima

    aruschima I know nothing

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    I have watched the drama now since month: a few people in the ME/CFS cyber space have managed to spread paranoia and many just parrot along and bubble away in the same tune !

    I am sick and tired from it, literally :In bed:!

    Stop speculation, inform your self, check the facts, and than comment ! Do not just follow blindly some people and parrot their paranoia over forums.

    Use google for god sake ! Or go on XMRV globla action, face book, and you will find tons of info.

    Just one sample here http://cfschronicles.blogspot.com/2011/02/what-independent-advocacy-means-to-me.html
    The WPI cooperated in the first study, and the WPI needs good independent studies out, which support their findings ! And we in Europe are in desperate need of researcher and doctors getting serious. This is what the CFS Liga and ASSSAM is doing, in cooperation with IrsiCaixa.

    More about ASSSAM here http://www.asssem.org/

    These people are harder hitting than any other organisation I have ever seen: they are going to speak to the senate, considering going to court, they published a manual on ME/CFS/XMRV to by pass mis-information by the governments and health institutions, and have, in a very short time, distributed more than 10 manual's to doctors, hospitals nurses and so forth and keep getting request's.

    They do not spend precious time and energy on attacking each other, or attacking other organisations. They go to work !

    If anybody dares to starts to tarnish this incredible people, or undermines raising funds for this very important research, I WILL GO IN ATTACK MODE :D
  5. cigana

    cigana Senior Member

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    I have made a donation. Sounds like it could be very helpful for us if this work gets to be published...

    Mark
  6. Esther12

    Esther12 Senior Member

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    I agree with aruschima that, for those wanting to donate money for XMRV research, this does look like a sensible choice. I feel sceptical about these big claims that are floating about without having been properly published.... but that certainly doesn't mean that there's anything wrong with that.
  7. Cort

    Cort Phoenix Rising Founder

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    It probably is. As Aruschima notes what XMRV really needs is for an independent lab to find it; that's what will turn the research communities heads around..If they seem to have found it - then supporting them would make sense to me. The fact that they're an HIV lab is reassuring - it gives them alot of credibility.

    That will be a fascinating presentation.
  8. Cort

    Cort Phoenix Rising Founder

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    I got this from Clara - if you want to look at their presentations. The posters by IrsiCAixa in this abstract book are numbers P 05, P 07, P 18.

    Only one XMRV presentation that I can see - XMRV: New Findings and
    Controversies
    - I guess that is them.

    There is a poster: XMRV and GBV Virus-Host Interaction

    At the 2010 CROI conference there were 7 presentations on XMRV including one plenary session...
  9. Snow Leopard

    Snow Leopard Senior Member

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    I think perhaps there is more to this story that we don't know.

    How likely is the continuing of this study, how much further funding do they actually need?
  10. aruschima

    aruschima I know nothing

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  11. eric_s

    eric_s Senior Member

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    Hi Aruschima

    I have started a question & answers thread for questions about those studies. It's here http://forums.aboutmecfs.org/showth...siCaixa)-Stalled-Questions-amp-Answers-Thread.
    There people can find Clara Valverde's email adress. I think it's better people can ask her directly. Please post your questions and answers to the thread, if Clara Valverde agrees with that, so that questions don't get asked multiple times, if possible.

    Thanks
  12. eric_s

    eric_s Senior Member

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    In case anyone needs the bank's name and adress for the account for international donations it is:

    Caja Ahorros Pensiones De Barcelona
    Av De Prat De La Riba, 13
    08915 Badalona
  13. aruschima

    aruschima I know nothing

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    Hi all,

    I have received the following pm from somebody who speaks spanish and has been in contact.
    (Since i do not speak Spanish , I cannot contact them my self.)

    If anybody has any more questions, they can contact Clara Valverde, or as Eric said.
  14. eric_s

    eric_s Senior Member

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    Clara Valverde speaks English, so it's no problem to contact her. Just please remember she is only human too (and with ME/CFS), so check this thread http://forums.aboutmecfs.org/showth...siCaixa)-Stalled-Questions-amp-Answers-Thread first and post your questions and answers there, if she agrees, so the same questions don't get asked over and over again.

    Btw, if anyone is wondering how IrsiCaixa is pronounced, it's more or less like "Eersee Caeesha". Caixa is from "La Caixa" (the name of the bank that founded the foundation that founded IrsiCaixa). It's Catalan (caja in Spanish) and is the way they call savings banks.
  15. eric_s

    eric_s Senior Member

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    Hi all

    I was a bit disappointed that we didn't hear anything new from IrsiCaixa's researchers at the CROI. But from what i've heard now, i don't think we have to worry. CROI is a conference about retroviruses and opportunistic infections, so it was not the right place to present work regarding a biomarker for ME/CFS. This is not IrsiCaixa's fault.

    So i guess we have to have some more patience, unfortunately. As far as i'm concerned, i still think they are doing good work and will donate to them again, when i can. But of course we should donate to other places as well, they are only one of many good possibilities.

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