Ride the wave !

Ride the Wave !

My day started long before dawn yesterday, with Linda so ill on so many levels ,it was all I could do not to explode with not knowing how to help her, with my helplessness in the face of overwhelming suffering.

Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in  ? With great respect and all credit to those who struggled, at who knows what cost to get to London  , I really do not want the see the one  I love  portrayed  as Micky Mouse or as  an object of contamination .

A friend has emailed to say they hope passers by were not confused by the message being given out.

That said, there is something wonderfully uplifting  about  those pictures on standup2me, the XMRV issue does seem to have  come over and there is  a  strong,positive  presence that you can feel.

The imagery issue though cannot be ignored. It's estimated that 40 protesters attended - but how many more were put off by the inappropriate mouse ears ? Maybe we can all learn something from this ??   

What  gives me great hope today  is the wave of protest that now seems to be sweeping through  the ME Community  , particularly exemplified on :


with its  message  :

Dear …...,

"Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW. Patients and their families are waiting."

If you haven't already ,please do see the excellent , short,  XMRV Epidemic are you next ? 

Malcolm X  once said : truth is on the side of the oppressed, let's face it : with the  research figures suggesting  that perhaps 10 million people in the United States, and hundreds of millions worldwide, could be infected with  a blood-borne virus for which the pathogenic potential for humans is  still unknown, with the evidence that people have contracted ME/CFS  after receiving a blood transfusion (De Meirleir et al, 1999), with all that is about to literally  explode  on XMRV next year ,  the truth that illnesses like ME have to be taken seriously , is now  completely overwhelming .


  1. Thanks Greg,

    From this one person long distant observation of the event, as limited as my view was, from the USA~ I interpreted the Mickey Mouse ears as actually belonging to those in the Gov't and their "Mickey Mouse Mentality" about the Reality of the THIS Illness... another interpretation: that this Disease and XMRV are NOT to be joked about.. Sometimes people can be more easily approached with humor than scare tactics. So I appreciated their dual pronged attack to this PR issue. I have NOT spoken to anyone as to what their "real" intentions were....

    I will also "keep adding" to my post on the event as I find new pics, video, and blogs about the event.

    I agree about your take on this next year..
    With the number of countries that are now having patients test Positive+ for XMRV and
    the number of papers that Dr. Judy has in her drawer that await to be "allowed" to be published.. The Damn is soon to break.
    After 23 yrs with this illness I myself am awaiting my XMRV test results also..

    Please "Support WPI" as it Really IS
    us against the World ~ Right now...

    Thx for all you do, also..

    UNITED we CAN Do This !!!


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