1st Nov 2010 - Lunchtime Protest at UK Depart of Health (Blood Ban}

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Oct 19, 2010.

  1. simpsons

    simpsons Member

    we welcome all to join our protest from any country send your emails and join us in making our chief medical officer sit up and take notice as we have joined with you to campaign. together we can make a difference. now is the time to dare to dream

    (permission to repost)

    I have a DREAM.

    On Monday November the 1st I'd like the Department of Health in Richmond House, Whitehall to look out of their window and see a SEA of patients with ME or their families and friends responding to the blood donation ban on that starts that day.

    Mark that date in your diary and ask family members to help NOW.

    When the Chief Medical Officer goes to lunch I'd like her to see ME patients and their family members with placards / handouts to say that WE KNOW the blood ban is really about XMRV and other viruses we could have.

    The DOH say that the November 1st ban is merely to "protect ME patients".

    If we needed protection from giving blood why not ban us 10, 20, 30 years ago? Many of us have been ill since the 80's.

    Have we really been in danger from donating blood all that time?

    What about those of us asked to give quantities of blood for tests or facing operations? Why didn't they tell us?

    The reason is that the DOH is too scared to admit the truth. New Zealand, Canada and Australia, all came out and issued a blood ban this year. They were honest. The ban is due to a paper in "Science" that reported a retrovirus (called XMRV) found in the blood of patients with ME. We know that the virus is in the UK because ME patients have been privately tested.

    The UK Department of Health issued a ban of people with ME giving blood for life but they stated that it was not related to XMRV. Dr Shepherd of the MEA said that this was "disingenuous".

    So, let's tell the Department of Health and the Chief Medical Officer what we think on the day. Tell them what we think about their decades of failure to treat ME and treat us honestly.

    Come to Richmond House at number 79 Whitehall London SW1A 2NS or if you are not able ask someone to come on your behalf. If they cannot make a placard then ask them come and help give out leaflets. Members of the public are always supportive of us and good natured when they see us at demos. Lots of people always want to stop and talk.

    We are meeting there at LUNCHTIME on the day. Our protest is peaceful and lawful. I've met with the Charing Cross Police. They do need to give official permission though and I was told that it is unlikely to be with-held.

    If you cannot come on the day, volunteer to help. Send them a FAX or an EMAIL on the day. Send a POSTCARD or LETTER.

    See the website and more info will be posted there closer to the time.

    www.notsonice4me.co.uk (bookmark this now!)

    Keep watching the website to check that police permission is given for the protest before you book any train tickets.

    Start making your banners/placards now. If police permission is with-held we will use them on another day!

    Please volunteer to help.

    a.. Distribute this email,
    b.. Offer to do press releases,
    c.. Put handouts together,
    d.. Contact the media and ask them to cover it

    Don't let this opportunity go by.

    Remember, if you don't do this - no one else is going to. It's up to us to say "enough is enough".

    I'd also like to pay tribute to Rivka and Robert's USA "Time for Action" campaign which has inspired so many people around the world.


    Warmest regards,
    Annette Barclay
    www.notsonice4me.co.uk (ME patient in London)
    [This Message was Edited on 10/20/2010]
  2. simpsons

    simpsons Member

  3. simpsons

    simpsons Member


    thank you for the homer joke i hadn t thought of that

    i do hope they look out of the windows and say doh!!! homer style, i hope it makes them think twice before trying to put one over on us again

    we need to stand up to them straight away otherwise it ll be like the its all in our minds nonsense

    there is now a letter campaign all inspired by rika s campaign

    check out the website notsonice4me.co.uk
  4. mbofov

    mbofov Active Member

    I just sent some e-mails following the instructions on the notsonice4me.co.uk website. Thanks for keeping us posted on this!

    Best wishes,


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