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URGENT ! SpanishCFS Liga needs our help , please sign petition !!!!

Discussion in 'Action Alerts and Advocacy' started by aruschima, Jan 16, 2011.

  1. aruschima

    aruschima I know nothing

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    I think the petition is not active anymore, because the The Health Ministry has already denied the petition for funding research into XMRV. But sign anyway and please support the Spanish CFS Liga in any way you can. See second post below.

     
  2. aruschima

    aruschima I know nothing

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    URGENT! The Health Ministry denies funding for research XMRV

    URGENT! The Health Ministry denies funding for research XMRV
    Published on January 13, 2011 by edu
    THE HEALTH MINISTRY DENIES FUNDS TO CONTINUE THE INVESTIGATION XMRV IN CHRONIC FATIGUE SYNDROME, WHAT CAN YOU DO?
    January 12, 2011

    The Ministry of Health has denied the Hospital Can Ruti researchers (in collaboration with Dr Clotet), who were investigating the role of retroviruses XMRV in Chronic Fatigue Syndrome (CFS), funds to continue their research. This team (Laboratory IrsiCaixa) is the only one in Spain has found XMRV in CFS and one of the few in the world that has begun to identify the immunological disorder exist in CFS. This team's findings had global significance on the retrovirus HIV (AIDS) and their effects on the immune system of people with HIV. Now they were making an important and necessary work on the SFC. But his funds are gone and the Ministry of Health does not want to give priority to this disease that affects 3 million Spanish people (women, children and men). Other research being done in Spain on the SFC, apart from Can Ruti, are from very little use (the use of NADH in CFS) to insulting (studies on the personality of people with CFS).

    We can not allow the Ministry to sabotage this important research!
    WHAT CAN YOU DO?

    1. Leire Pajin WRITE
    Write to the Minister of Health, Social Policy and Equality, Leire Pajin, saying that research in CFS XMRV IrsiCaixa Laboratory is a priority, that the lives of millions of Spanish depend on such research and to reconsider their refusal to give them funds.
    You can send an email to:
    oiac@mspsi.es
    Or write by post to:
    Minister Leire Pajin
    Ministry of Health, Social Affairs and Equal
    Paseo del Prado, 18-20, ground floor, corner of Lope de Vega. 28014 Madrid.

    2. WRITE TO THE NEW TEAM OF SALUT CATALAN DEPARTAMIENT
    On May 21, 2008, in Resolution 203/VIII vote in the Parliament of Catalunya on services to Chronic Fatigue Syndrome and Fibromyalgia (FM), resolution was voted unanimously, the CiU deputy, Francesc Serena Sancho said, people with CFS and FM to understand their reality, which is committed to his cause, adding: "Never again be alone."
    Dr Sancho Now Serena is the new Secretary for Strategy and Communication in the Health Department of the Generalitat de Catalunya.Escrbele to tell him that you're worried @ the Ministry has denied funds Can Ruti laboratory for further investigation needed on XMRV in CFS and that they will close this avenue of research for lack of funds. Tell him you know about his personal and political commitment to these new diseases and we need a financial commitment for the 250,000 people in Catalunya sick with CFS and FM may have some future prospects.
    Your email is francescsanchoserena@hotmail.com

    3 - WRITE TO EQUIPMENT CAN RUTI
    Write Can Ruti team to thank the research work have been carried out on the SFC for the past year, research has given us important information on the immunological derangements in CFS. Sorry to tell you that they have not received a grant from the Ministry had expected and we hope to continue seeking funds we need, desperately, to continue working on the SFC, that we can leave now and no other serious virologists in Spain who may do the job they do. In Spain, they are our only hope.

    You can write to:
    Dr Clotet Bonventura
    Dr Julian White
    Dr Cecilia Cabrera
    http://www.irsicaixa.es/contacta

    4. DONATIONS WANTED
    Find friends, contacts, associations, etc., grants for study in CFS XMRV Can Ruti:
    CTA No: 2100 0325 05 41 02001422
    Concept: SFC XMRV STUDY
    Beneficiary: Foundation IrsiCaixa
    Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
    Contact: Lourdes Grau lgrau@irsicaixa.es

    5. CIRCULATE THIS NEWS TO ANYONE WITH SOCIAL AWARENESS:
    - SFC partnerships, FM and MCS
    - Other patient associations
    - Health professional groups
    - Groups interested in public health
    - Human rights groups
    - Groups that are trying to improve our society
    - Political parties
    - Deputies
    - People fighting
    - Etc.

    THANKS,
    SFC League
    www.ligasfc.org
     
  3. aruschima

    aruschima I know nothing

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    I am very disappointed by the lack of response here !
     
  4. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    I signed. Thanks for your work in making our voices heard to the Spanish Govt.
     
  5. glenp

    glenp "and this too shall pass"

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    I signed - I guessed at the language
     
  6. aruschima

    aruschima I know nothing

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    Thanks GlenP and Justin.
     
  7. Rita

    Rita Senior Member

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    I donated two times last year in this count.
    Now we are in a big economical crisis in Spain,and is difficult to obtain funds for research, from government or from other people.
    This research is the most serious made in Europe, I think, in close contact with WPI.
    I hope they dont stop the research because financial reasons.We need their work and it will be interesting and necessary for all the CFS people in Europe.Years are passing and we need treaments .
     
  8. aruschima

    aruschima I know nothing

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    Rita,
    Yes, you are so right ! This research is the most serious in Europe and it is important globally !

    It is independent research , confirming the research done by the WPI, and they are in contact with the WPI. They want take the next step to study the pathology of XMRV and related viruses. The research is done at the AIDS Research Institute IrsiCaixa, in collaboration with Dr.Bonaventura Clotet !

     
  9. Merry

    Merry Senior Member

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    I signed, but, because I don't know Spanish, I spent a couple of minutes pondering and clicking. Finally I scrolled to the bottom of the page and found the "sign petition" bar, in English.
     
  10. eric_s

    eric_s Senior Member

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    I just made a donation to that account. Not much, only 15 Euros, but i can't afford more at the moment. If many people donate, even if it's such a small amount, it can have a big impact.

    I think it would be good to have some additional information, so it's easier to donate, and people know better what happens with the money they give.

    It would be good to have an IBAN and BIC, for people outside of Spain. There are calculators on the internet, but i think it would be better if IrsiCaixa or the Liga SFC could provide them, so we are sure they are correct.

    And what would be good to know...
    What is the status of IrsiCaixa's XMRV research at the moment? Are they working right now and if so, on what?
    Or do they wait for more donations until they can do more?
    Does all the money donated with the message "Estudio XMRV SFC" go to that research only, so that it can't be used for other, non XMRV related things?
    What will happen with the money that has been donated and is left over, once the study is finished?

    I have asked them about these things in an email just now and will post the information they give me.

    I think the more that people know, the more they can be convinced to donate.

    This seems to be the best work being done in Europe at the moment and IrsiCaixa looks like a perfect place to do that kind of research, check out their website. http://www.irsicaixa.org/en
    They have a lot of experience with retroviruses.
    So, especially if you are in Europe, please donate, there are no or only very low bank fees for a transfer within Europe.
     
  11. maryb

    maryb iherb code TAK122

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    arushima - i think sometimes its hard for people with ME to write letters. me in particular, I'm great though at petitions and e-mails, but if I have to write as soon as I have to think my mind goes numb, what I'm saying is for those who are in touch with the organizers, I would suggest any form of e-mail campaign would get more support IMO. Supplying people with templates and all the e-mail adresses really does make a difference.
     
  12. aruschima

    aruschima I know nothing

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    Eric, great job writing to them and asking for more information !

    Maryb,

    I would love to do more, but I do not speak Spanish, understand only what I get from the google translation and ASSSEM blog. This limits my ability to get really active.

    If people are interested to form a Online Europe (Global) Action Group, please do pm me !

    We should have as many different language speaking people as possible.

    Any Spanish, Italian, Norwegian, Swedish, Dutch, French out there ? Who would be willing to help with translations? (And possible creation of campaigns ?)

    Please PM me.

    There is more information on the ASSSEM page, but sadly also only in Spanish; google translation is really crap.

    From what I gather, the focus is now on A marker for CFS, "high in CD8 CD5 and CD57 on NK low" for example validation of disease and on pathology. They are going strait to the point !

    What is so great about ASSSEM : it is a group of patient and professionals in the field of medicine.
    For the first time doctors/ researchers are doing the campaigning them self ! In Europe, up to this date, unheard of.

    Great stuff !

    http://www.scribd.com/doc/47029038/ASSSEM-Presentacion-en-PP

    http://www.asssem.org/
     

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