Spanish XMRV researchers to report Dec 9 on immune dysfunction...

Discussion in 'Fibromyalgia Main Forum' started by ProHealth, Dec 7, 2010.

  1. ProHealth

    ProHealth Member

    Spanish XMRV researchers to report Dec 9 on immune dysfunction they've found "in all CFS/ME patients"

    Following is a news release posted Dec 6 via Co-Cure by Clara Valverde on behalf of the Spanish CFS League – Liga SFC. (Expect initial reports/recordings to be in Spanish/Catalan.)

    “This Thursday, December 9, we are organizing a big event here, in Barcelona, in which the Spanish XMRV researchers will explain their findings of XMRV in the Spanish CFS/ME population.

    They will explain their findings regarding the XMRV, and more importantly, they will explain the common immune dysfunction they have found in all CFS/ME patients: immune deficiency due to the CD8 cells (for comparison's sake: HIV is an disease in which there is immune deficiency due to CD4 cells, and we are immune deficient because of the low CD8s).

    They will also explain to the patients who will be present (we have invited patient associations, primarily) how we should live until there is a treatment for XMRV.

    In the same event, we, the Liga SFC (, will launch a new association of health professionals in support of ME (ASSSEM - will be at, under construction) which will present a document we have written for patients to take to their family doctors and other doctors.

    ASSSEM's strategy is to bypass the CFS units the goverment has set up (which are "fibro-parkings": they only park you with useless medication and cognitive behavior therapy) and go directly to the experts:
    • Immunologists (not many in Spain),
    • Infectious disease specialists,
    • Virologists,
    • HIV doctors, etc.

    Here is the announcement of the Dec.9 event in Spanish: [click the “Translate” button for a rough English version].

    The document we have put together goes beyond the Canadian Criteria because the findings of the past year or so go WAY beyond Carruthers et al. We hope bad health will not interfere too much with our translating the document to English in the next month or so.

    The Dec. 9 event will be taped (in Spanish and Catalan) and posted in our website, along with the Spanish version of the document –

    We (the Liga SFC and ASSSEM) have made ourselves T-shirts that say: "CFS = Immune deficiency related to the CD8 cells".

    Last week, the members of the Liga SFC and leaders of the main Catalonian CFS/ME and FMS associations were given an award by the ACAF (the biggest CFS/ME, FMS and MCS association in Europe, with over 4000 members, based here, in Catalonia and which only takes Catalan members) for all our activism, in the ACAF's 10 anniversary event.

    Greetings and good wishes from Barcelona, Spain,

    Clara Valverde
    Liga SFC

    Original article on
  2. bakeman

    bakeman New Member

  3. bakeman

    bakeman New Member

    "Here is the announcement of the Dec.9 event in Spanish: [click the “Translate” button for a rough English version]."

    Where is the translate button?

  4. Jayna

    Jayna New Member

    to getting an effective treatment.

    Hopefully, since a lot of the problems with AVR drugs in the past involved getting them into the target cells without killing everything they touched along the way, only minor tweaking of HIV drugs will be needed to shift their target to CD8 instead of CD4.

    I am looking forward to hearing the presentations about how to manage while waiting for treatment (once they get posted, they only happened last night). My Spanish was never good and it's sure rusty now even before the technical terms get thrown in there. Maybe somebody more fluent will post a play-by-play in English.
  5. gapsych

    gapsych New Member

    Any information?

  6. Jayna

    Jayna New Member

    I'm sending the link to a Spanish-reading friend in Europe in hopes he has time to dig through the site for the promised immune management strategies.

  7. Jayna

    Jayna New Member

    The only things about management/treatment they recommend (while waiting for more definitive XMRV research) are ones we've already heard about: Valcyte etc for reactivated viruses & pathogens, anti-inflammatory steps to protect the body, avoidance for MCS, and some homeopathic suggestions to rebalance the immune response. Although I've never tried homeopathy myself, I'm including that bit as I haven't seen homeopathy discussed much here.

    In the SFC / MS, the immune system may be in a position of hypoactivity or hyperactivity; two specific forms may allow rebalancing immune activities as appropriate:

    2LEID provides support in various immune diseases accompanied by a normal or deficient immune status.

    2LEAI provides immune support in a state of immune hyperreactivity

    And that's the only thing 'new' out of the whole presentation. Sad, after the hype. But maybe it's new to Spanish PwC's?