UK XMRV demo 1st November

[Kate_UK]

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/

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)

 

[urbantravels]

Go UK! Make a big stink!!!!

 

[ukxmrv]

Don't forget that volunteers are needed for this project. Email the organiser at contact@notsonice4me.co.uk

Get involved even if you cannot get there on the day

 

[RivkaRivka]

this is great!! you have our support from across the pond!!!!!!!!!!!!

 

[Uno]

To support this campaign, Action Now - a brand new advocacy group, are organising a "TIME FOR ACTION:UK" style campaign, based around the one that had notible success with the NIH. To be launched prior to the Demo so keep your eyes peeled for announcements. Not so Nice for M.E and Action Now are working their pretty backsides off behind the scenes to make our voices heard.

 

[ukxmrv]

Thanks great Uno, people who cannot get to the demo want their voices to be heard as well. Hope they will be included in this new venture.

 

[fred]

Advisory Committee on the Safety of Blood, Tissue and Organs: public meeting 26 Oct

This might be another meeting worth attending for those in London. It is SaBTO's (Advisory Committee on the Safety of Blood, Tissue and Organs) third public meeting to be held on Tuesday 26th October at 10am. The subject of the meeting is: Organ transplantation - benefits and risks of higher risk organs.

There is time allocated for public comments and questions. It may be worth asking if the ban on blood donation extends to organs.

Details are here.

http://www.dh.gov.uk/ab/SaBTO/DH_119016

 

[Uno]

I think someone may be attending that meeting but I need to clarify that! Absolutely UK XMRV, the idea of it is a multi headed approach as it were so people who are bedbound can be involved by writing and people can protest if they can/are able/get friends to go etc.

Action Now also have some fun stuff coming up next summer...so look out for tricycles with banners in a town near you when the weather warms up!

 

[pictureofhealth]

The UK's ME Association has also posted information and a link to details about this demo on their website.

Times really are a'changing!

http://www.meassociation.org.uk/?p=2580

 

[Kate_UK]

Police permission for the demo has been granted.

 

[ukxmrv]

There's also a Facebook page just been created

http://www.facebook.com/?sk=events#!/event.php?eid=170256226322136

 

[Sasha]

News of the demo has reached the LA Times!

 

[urbantravels]

That is our old friend Trine Tsouderos of the Chicago Tribune.

Her article bugs me (and especially since the LA Times keeps reprinting every negative story about XMRV that they can find and has no reporter of their own following the story - they gave big play to the Weiss paper too.) Is there a thread yet for this article? Guess I'll get one started if not -

 

[Kate_UK]

Are you coming from Chester or on the way?

Contact Susie as below

I am co-ordinating a free coach/minibus to arrive at Whitehall at 12 and leave at 3.30. We will be leaving Chester at 06.30/07.00 and can stop to pick people up at any motorway services (M6/ M1) along the way (might be able to go up M56 stopping at Lymm and Knutsford too). E-mail me (susiej1710@hotmail.com) with your mobile phone number and postcode if you can join us. Pass the message around please. Room for 49 people if it's a coach load, or 15 if it's a minibus.

from http://www.notsonice4me.co.uk/

 

[me_is_realist]

They only need beans for that!

 

[jace]

Bump. It's getting closer, folks. Anyone planning to attend, here are .pdf files of a leaflet and a flyer to download and print.

 

[jace]

Bump again. New version of the Blood poster, the one with more text. Some problems with the previous one, so pleas use this one instead.

 

[Frank]

wishing you guys all the luck!

 

[pictureofhealth]

Hoped there might be some coverage on the lunchtime TV news - nothing on ITV or BBC website yet - will check again tonight BBC & ITV news.

 

[Sasha]

Hoped there might be some coverage on the lunchtime TV news - nothing on ITV or BBC website yet - will check again tonight BBC & ITV news.

Hi picture - the protest is 12:30 to 2:30 pm so maybe if there's coverage it will be later. I had been assuming it would be too small a protest to be covered by the media - so many are so sick I find it hard to imagine many people managing to demonstrate. There's also such a lot of high-profile stuff on the news today as well. I would be very happy to be wrong, though! And I think they're doing a great thing just by doorstepping the DoH.