The demo is in London at the Dept of Health on 1st November, also this website has details of what to do if you can't go to London.
http://www.notsonice4me.co.uk/
more info here http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1010c&L=co-cure&T=0&P=5526
http://www.notsonice4me.co.uk/
Why November 1st?
This is the date that the blood ban on people with ME comes in.
We will not be allowed to donate blood from this date
The Dept of Health says this is for our own good but patients believe that the discovery of a Retrovirus in the blood of people with ME is the real reason
more info here http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1010c&L=co-cure&T=0&P=5526
(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.
http://www.youtube.com/watch?v=z5eLRxtQLok
Warmest regards,
Annette Barclay
www.notsonice4me.co.uk (ME patient in London)