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xmrv test in Spain? Translate?

Discussion in 'XMRV Testing, Treatment and Transmission' started by joyscobby, Nov 8, 2009.

  1. joyscobby

    joyscobby Senior Member

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    I got this link from someone in Spain. They said they are offering tests for about 600 - 800 Euoros thats about 900- 1200 dollars.

    I cannot speak Spanish so therefore cannot read it either so cannot tell more.
    She did say to phone them so may not be on there.

    1st I have heard of in Europe offering test but unsure of what they are offering. Would be grateful if someone could check this out.

    Also I would say same caution as with other test that has not linked to WPI.
    Thanks
    http://www.institutferran.org/fatiga_cronica.htm
     
  2. Alice Band

    Alice Band PWME - ME by Ramsay

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    Joy,

    A really rough translation can be done through the internet. I just used Babelfish to take a look at the page. Although XMRV is mentioned and there are links to the interviews, I can't see them offer a test.

    There is a lot of information on their page though and I've probably missed it

    http://babelfish.yahoo.com/
     
  3. joyscobby

    joyscobby Senior Member

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  4. cfs since 1998

    cfs since 1998 *****

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    I know a decent amount of Spanish and I did not see anything offering a test. I think it is more of a reference article about what CFS is.

    However I love this chart, it's so incredibly simple yet it makes very clear what so many people don't understand (SFC is Spanish acronym for CFS). Maybe we should make one in English and also make it more to scale to reflect real prevalance rates.

    [​IMG]
     
  5. Alice Band

    Alice Band PWME - ME by Ramsay

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    Joy, do you mean this bit

    Sounds like a study maybe?

    ====================================================

    Second validation of the presence of retrovirus XMRV in patients with Syndrome of serious Chronic Fatigue (Fukuda criteria and Canadian positives - certificates by an expert doctor, demonstrable neurocognitivo impact and tests of effort test-retest (24h) with fall superior to 25% in a second and minimum of an analytical alteration of immune profile), and healthy population.
    Selection of 100 patients and 100 healthy controls. Totally gratuitous study.

    The patients will receive their results two months after the extractions of the samples.

    More information: Mrs Lurdes Farreras (935522747). Beginning of the present study: January of 2010
     
  6. joyscobby

    joyscobby Senior Member

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    got this

    Second validation of the presence of retrovirus XMRV in patients with Syndrome of serious Chronic Fatigue (Fukuda criteria and Canadian positives - certificates by an expert doctor, demonstrable neurocognitivo impact and tests of effort test-retest (24h) with fall superior to 25% in a second and minimum of an analytical alteration of immune profile), and healthy population. Selection of 100 patients and 100 healthy controls. Totally gratuitous study. The patients will receive their results two months after the extractions of the samples. More information: Mrs Lurdes Farreras (935522747). Beginning of the present study: January of 2010.
     
  7. cfs since 1998

    cfs since 1998 *****

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    Looks like they are recruiting for a study, 100 patients and 100 controls. At the top I think they are offering credit cards which help fund research when you use them.
     
  8. Robin

    Robin Guest

    Why is it so hard for Wessely, Reeves, et al to understand this concept?
     
  9. Alexia

    Alexia Senior Member

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    Hi,
    Here " Institut Ferran de Reumatologia, ofrece el servicio de deteccin de la presencia del virus XMRV, mediante tcnicas de microarray y de amplificacin de polimerasas, en el contexto de validacin de los hallazgos publicados. No existe suficiente aval cientfico para conocer la utilidad de esta prueba que, por el momento, carece de inters clnico. Su realizacin es experimental."

    They say there is the possibility of testing for the XMRV Virus at their Institute but that the test is for the moment only experimental because there isn't enough scientific evidence that the test is reliable (they describe which methods they use to test) But they don't mention any price.
     
  10. joyscobby

    joyscobby Senior Member

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    I will try and phone. Usually someone speaks English and find out moe. I will post what I find out. Thanks for help.
     
  11. parvofighter

    parvofighter Senior Member

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    Spain: XMRV test for prostate and ME (SFC) Spring 2010

    Hello Spanish bloggers with SFC! Just found this very encouraging blog at: http://sfc-tratamiento.blogspot.com/2009/12/llama-al-instituto-nacional-de-salud.html (English-speakers: I googled it, then hit Google translate).

    Wednesday December 9, 2009
    Call the National Institute of Health Carlos III
    For those of you in Spain: The National Institute of Health Carlos III (+34) 91 822 30 00 (Microbiology) I said this morning that they are receiving many calls asking for XMRV detection test present in prostate cancer and SFC (Sindrome Fatiga Chronica) .
    For this reason they are preparing a test, which could be ready for spring 2010, and in theory covered by Social Security.
    Please call this number and ask all who follow me the test to create social demand and actually do it and give it priority.
    Thank you very much. You can hang this in your blogs.

    OK, I'm not in Spain, but that has me wondering. Could someone please answer the following questions?
    • Is the Spanish government sufficiently convinced by the prostate and/or SFC research that they are rolling out testing in spring 2010? In other words, do they know something we don't? Have the XMRV studies been sufficiently replicated, and tests validated?
    • Could someone in Spain please confirm as much of the above information from the National Institute of Health Carlos III as possible?

    A springboard for other countries?
    Why does a Canadian want to know? Well, if your Spanish government is moving this quickly and decisively (and that would be very cool), what XMRV information are they basing that on? Is there something that we don't know yet, that they do? If we know, then we can lobby more effectively in Canada for XMRV testing and treatment. A good Canadian analogy: the snowball effect. :D That's what we want - one country adopts XMRV testing and covers it in their public or private health system. Then another. Then another...
     
  12. fresh_eyes

    fresh_eyes happy to be here

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    Wow, parvofighter! That is some really great and important news. It would definitely provide some leverage to pressure other governments into offering the same. I wonder how we can reconfirm - is anyone in Spain, or able to call there??? :D
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I sent your question to someone with CFS in Spain.

    Sushi
     
  14. parvofighter

    parvofighter Senior Member

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    Spanish Yahoo SFC group - could they help?

    I also came across this Spanish Yahoo group: SindromeFatigaCronica-EncefalopatiaMialgica, but my browser isn't cooperating with the Spanish cookies, so I can't log on. BUT I was able to see the titles of the discussion threads, and with some intuitive translation they definitely have XMRV discussion, including discussion of Carlos III. Anyone able to log on here http://es.groups.yahoo.com/group/SindromeFatigaCronica-EncefalopatiaMialgica/ , & ask if they could respond to our questions above?

    Thanks!
     
  15. Andrew

    Andrew Senior Member

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    Interesting. The people who put up this web site really did their homework. One of the better introductions to CFS I've seen. Unfortunately, I can't make out any information about people getting tested outside of Spain. I'm reading this via Google translate.
     
  16. Lily

    Lily *Believe*

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    OH my

    I think you're right, Athene.....maybe start a new thread that might get more notice?
     
  17. serg1942

    serg1942 Senior Member

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    XMRV in spanish hospitals. From Spain.

    ***Hi All,

    ***I am the owner of the spanish forum:


    http://es.groups.yahoo.com/group/SindromeFatigaCronica-EncefalopatiaMialgica/messages

    ***and also know the guy who has permormed this requisition to be singed, so that we can ask for a free XMRV test to the government:


    http://www.petitiononline.com/XMRV/petition.html

    ***I will try to answer your questions below:




    OK, I'm not in Spain, but that has me wondering. Could someone please answer the following questions?
    Is the Spanish government sufficiently convinced by the prostate and/or SFC research that they are rolling out testing in spring 2010?

    ***I think they will do the tests soon, as theres much business involved. I just doubt about the reliability of the test. Anyway, if it is for free (I mean, if it is done by the Spanish public health care), It doesnt hurt to be tested. Ill try if I can, but also will bring my parents or some (female) friend just to have a reason for her to be tested, not being of my family- to compare our results

    In other words, do they know something we don't?

    *** I dont think so. It is true however that allopathic Spanish medicine is considered very competent, and this is a subject which they sure are interested in

    Have the XMRV studies been sufficiently replicated, and tests validated?

    *** Again I dont think so. Just think theres hurries in having a test ASAP. I do hope XMRV is the answer to CFS/ME and others diseases as well. But it is also true that it is very convenient to the Spanish government to label CFS like an infection disease, forgetting thus the stressors needed to develop the illness (toxins, amalgams, vaccines, etc.). This is my impression being here

    Could someone in Spain please confirm as much of the above information from the National Institute of Health Carlos III as possible?

    ***Yes, it is true, they are confirming to many fellows that they will have soon this test available. Theres even other hospital in Barcelona, called Valle de Hebrn, http://www.vhebron.net/ that is saying to their patients that it is likely for them to be tested on January. Again no idea about reliability....


    A springboard for other countries?
    Why does a Canadian want to know? Well, if your Spanish government is moving this quickly and decisively (and that would be very cool), what XMRV information are they basing that on?

    ***I dont think they have more information that other countries. Maybe the more agility is due to have a public health care service already appliedbut not surethey are not being very specificwe know things thanks to patients of those hospitals

    Is there something that we don't know yet, that they do?

    *** I really dont think sobut cant be sureI wish they do though

    If we know, then we can lobby more effectively in Canada for XMRV testing and treatment. A good Canadian analogy: the snowball effect. That's what we want - one country adopts XMRV testing and covers it in their public or private health system. Then another. Then another...

    ***Hopefully this snowball effect takes place!!!


    ________________________________________
    Wow, parvofighter! That is some really great and important news. It would definitely provide some leverage to pressure other governments into offering the same. I wonder how we can reconfirm - is anyone in Spain, or able to call there???


    *** I am here, and can confirm what you have read. So far no one we know by forums, blogs, privately mails-chains, etc, has been tested for XMRV. When I first know for someone, I will post here so that you all can be aware of that.

    Regards,
    Sergio
     
  18. fresh_eyes

    fresh_eyes happy to be here

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    Sergio, muchissimas gracias!
     
  19. parvofighter

    parvofighter Senior Member

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    Muchas Gracias Sergio!

    Sergio, thank you so much for your very helpful answers. It's really exciting to see your Spanish institutions running with this XMRV research, and kudos to you for your advocacy. Do keep us updated, we're all cheering you on!

    May the snowballs begin :D

    Muchas gracias!
     
  20. serg1942

    serg1942 Senior Member

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    De nada! (you're welcome!). I will try to keep all you updated in this regard. Most PWC's here are waiting for an antirretroviral like a miracle, and they have "all their hopes put on this" (I guess you understand that!), so sure I will know when someone is testing the first time...

    Regards
    Sergio
     

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