Discussion in 'Advocacy Action Alerts' started by Sasha, Nov 19, 2017.
787 signatures now...
Yes and what I was really pleased to learn was how supportive JC has been to constituents with ME and related issues, including research and receiving informational material from IiME Research, so it feels like a solid show of support of something he's been genuinely interested in.
I just went to sign the card and noticed Mady Hornig has added her name.
Jo Cambridge signed quite early on too
I hope if JC can’t make it because of some crisis that he will do a video and then maybe something like a visit to the Biobank that can be publicised. Hopefully he will bring the shadow Health secretary as well.
Anyone know if Manchester/Greater Manchester based ME groups/advocates are in contact with Andy Burnham. My impression is that he is someone who is open minded and prepared to overturn previously held lines/views. a previous health secretary albeit only for 11 months he has already demonstrated support for tackling health injustice in the contaminated blood scandal.
Mady Hornig has been a regular over the years of the IiME Research Conference and Colloquium and visited Norwich Research Park in October 2015 to speak alongside PhD student Fane Mensah (pictured beow with Ian Gibson) who works on the B-cell research at UCL with Jo Cambridge.
Andy Burnham was Secretary of State for Health when the government decided to impose a ban on blood donations by people diagnosed with ME or CFS, intitially until patients had "fully recovered", but a lifetime ban came into force on 1st November 2010 for anyone who'd ever had a diagnosis and this applies to Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Post-Viral Fatigue Syndrome.
ETA: IiME wrote to Andy Burnham in 2010 and here are the links:-
From IiME March 2010:
http://www.investinme.org/Article-700 SSfH March 2010.htm
Reply from DoH:
http://www.investinme.org/Article-700 SSfH March 2010 Reply1.htm
Follow up from IiME April 2010:
http://www.investinme.org/Article-700 SSfH March 2010 FollowUp1.htm
842 signatures ...
Bump! The card now has 849 signatures and two days to go.
Surely we can get to 1,000?
873 now. (But surely all those Bernards can't be different people - all on the same day?)
I've deleted several of those (will have to check again later in case I didn't get them all).
It's not the fault of the signatories, first time it happened on another card was a friend of mine and she was horrified to see her message repeated about 50 times and no sooner was I deleting one than another popped up, so the card site sorted it.
Only about 20 Bernards now!
Should be down to one now, bless you Bernard whoever you are.
Currently 20 signatures to reach a thousand thanks. http://www.groupcard.com/c/vRZACP3vJAn
Looks like two now! (Unless there are duplicates!)
I've updated the thread title.
my local ME support group just contacted me they put it on there page about an hour ago.I asked them to a couple of days ago.i had given upon it as there seemed to be disagreement as it was considered political!its a big group[a city]so may get a few before the card is sent.
Now at 1001, but I don't know how many Bernards are included in that total.
only one Bernard now !!
1031 now - not sure what time it's being sent.
Separate names with a comma.