Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Attn ALL those in Europe

Discussion in 'Action Alerts and Advocacy' started by Carla-nl, Nov 2, 2009.

  1. Carla-nl

    Carla-nl Veteran by now

    Attn ALL those in Europe - XMRV awareness

    At first I thought XMRV was another hype and didn't pay much attention to it. Then I watched the entire CFSAC conference online, including the XMRV presentation and discussion, then i read the complete scientific paper.... I'm game !

    Today I searched for news in the press in our country, I'm sad to say I found only one news entry which - of course - quoted Prof.Dr. Van der Meer (CBT preacher in The Netherlands) saying the new research didn't proof anything yet and how he's seen possible causes come and go over the years.

    With all the knowledge I have gathered over the last few days, I did my best to compose an email to interest the newspaper in question to take another look at the matter.

    I also wrote to the CDC, CFSAC, WPI not to forget to do research in Europe and other parts of the world....

    But I'm only one person accross the pond from where it's all happening.

    People who's native tongue is not English often struggle to follow complicated communications and research. Most patients are not even aware there even might be a physiological cause, they are brainwashed into believing it's in their heads or that there is no cause nor cure. I'm sure that all participating here speak sufficient English to translate knowledge and help increase awareness in their own country.

    Do a google search on news casts/press publications in your country regarding XMRV... I found only 1, not even giving a correct image.

    CFS/ME/FM is an international issue, we need to make sure the world is aware of that. Please take initiative and speak up in YOUR COUNTRY. Let's give the researchers a hand and path the way !

    Contact me if you want to coordinate efforts or want to use my copy of the email I sent out to the CDC,WPI,CFSAC.

  2. Nina

    Nina Senior Member


    great post! I'm from Germany and I've been having the exact same thoughts for the last 2 weeks.

    We need a coordinated effort for ALL of Europe. It's kind of hard to find out where to start though.

    Networking and gathering people from as many European countries as possible would be a good starting point. I would be happy to translate letters into German. I'm afraid I am not really familiar with the European ME alliance, maybe this could be a project for them (with the help of everyone who is interested)? I will try to find out more about that.

    I totally agree, the media coverage here is almost nothing compared to the U.S.

    Are there more people here from Europe?

  3. Carla-nl

    Carla-nl Veteran by now

    Hi Nina from Germany

    Thanks for your reply !

    We have a rather large international member database over at, I could send out a mass-email this week asking more people to step up and to contact national media/government/me-societies ??

    I'm also on an email list for advocates, i'll throw them in too.

    Anyone interested to help with this effort, please contact me via the DS website or via PM. (do not post your email address here for privacy reasons)

    Nina, you're miss Germany from now on :)
    I know of a few CFS communities in Germany, it would be interesting to find out what they report. But what i'd be most interested in, is what kind of media coverage there is !

    It's one thing to send out a bulletin, it's easier to comment on what's already posted as in the NRC in Holland.

  4. Carla-nl

    Carla-nl Veteran by now

    Reply from WPI , Judy Mikovits

    From: Judy Mikovits
    Sent: Monday, November 02, 2009 7:53 PM
    To: Diagnose Support
    Cc: Angee Wyss-Gordon ; Annette Whittemore
    Subject: Re: CFSME / XMRV is NOT an USA only problem - do not forget patients in EUROPE or elsewhere

    Dear Sirs/madams
    We are not forgetting the rest of the world. I have cc's our public relations group to make certain that we address all of the appropriate governments/agencies.
    Best regards,

    Judy A Mikovits, PhD
    Research Director
    Whittemore Peterson Institute
    c/o Dept Microbiology and Immunology MS/199
  5. MEKoan

    MEKoan Senior Member

    Hi Carla,

    If the virus is blood and tissue borne, as it appears to be, and the prevalence in the general populations is confirmed at 3.7%, keeping XMRV out of the blood and tissue banks will automatically become a WHO priority.

    I would think that the biggest news "hook" at the moment is not ME/CFS but a new retrovirus threatening the health and safety of everyone.

    Unfortunately, but understandably, self interest trumps everything else.


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