"Protecting the Nation's Blood Supply. Not!" Campaign and video (Nov 30, 2010)

RivkaRivka

Senior Member
Messages
368
Likes
579
Hi friends: I hope you will help me get the word out on this grassroots campaign that aims to pressure the American Red Cross and U.S. government to finally start protecting the nation's blood supply so that no one else will get ME/CFS/XMRV from a blood transfustion. Please forward and post this below notice on your blog/website/facebook. Thanks! -- Best, Rivka


== Protecting the Nation's Blood Supply. Not! ==

Video of our "playful-street-action-with-a-message" found here:
http://www.youtube.com/watch?v=1DSzTCYPAvs

Rationale: In Oct 2009, the journal Science published a ground-breaking paper establishing an association between a newly discovered retrovirus called XMRV and the disabling illness ME/Chronic Fatigue Syndrome. It's one year later and the U.S. government still has not banned people with ME/CFS from donating blood, thereby putting at risk 5 million Amerians who get blood transfusions each year. In an effort to protect their own blood supply, Australia, Canada, England and other countries *have* banned people with ME/CFS from donating blood. In the absence of the U.S. government protecting its citizens, it is up to us to turn on the political pressure; we need to force their hand with pressure from the grassroots, from "the bottom up."

Action: Email/call/fax your state Red Cross offices with the below simple 3-sentence message. If enough of us contact the local offices, they will, in turn, tell their national headquarters and the pressure will come from inside the Red Cross itself, from the bottom up. Feel free to also contact the national President and CEO of the American Red Cross. Sample email and contact info found below.

Working for change together,

Rivka, November 30, 2010
Rivka (at) ThatTakesOvaries (dot) org


SAMPLE EMAIL

Dear Red Cross,

XMRV: A newly discovered retrovirus. What are you doing to protect the nation's blood supply?
This playful YouTube video explains the seriousness of the issue http://www.youtube.com/watch?v=1DSzTCYPAvs

[Your name here]
[Your geographic location here]

CONTACT INFO

1) Find your local and state Red Cross offices here:
www.RedCross.org/where

If you want to do more, contact:

2) Gail McGovern, President and CEO of the American Red Cross
Email: McgovernG@USA.redcross.org
Phone: 202-303-5303
Fax: 202-303-6602

3) Health and Human Services Secretary Kathleen Sebelius
Email: Kathleen.Sebelius@HHS.gov
Phone: 202-690-7000
Fax: 202-690-6392

4) National Institutes of Health, Director Francis Collins
Email: collinsf@od.nih.gov
Phone: 301-496-2433
Fax: 301-402-2700

5) National Institutes of Allergy and Infectious Disease, Director Anthony Fauci
Email: afauci@niaid.nih.gov
Phone: 301-496-2263
Fax: 301-402-3573
 

George

waitin' fer rabbits
Messages
851
Likes
80
Location
South Texas
I'm in for sure!

I sent to my Red Cross chapter, we only have one and to each of the e-mails above. Do we need to do it daily?
 

RivkaRivka

Senior Member
Messages
368
Likes
579
Thanks, all! This is good timing, if we hit up the Red Cross now. The Blood Advisory meeting is being held in mid-December. And they'll discuss XMRV there:

http://www.fda.gov/AdvisoryCommitte.../BloodProductsAdvisoryCommittee/ucm234882.htm

Well, I called the national Red Cross headquarters (Wash DC) and the person I spoke to had never heard of XMRV. I also called my state Red Cross office. Same thing.

Warmly,
Rivka
 

Sushi

Moderation Resource Albuquerque
Messages
17,169
Likes
26,795
Location
Albuquerque
RivkaRivka,

Maybe your best YouTube yet--loved it! :victory:

I wrote the New Mexico Red Cross, linking the Blood Advisory Meeting and of course your video.

Let's see if they reply...

Sushi
 

BEG

Senior Member
Messages
1,032
Likes
188
Location
Southeast US
"Protecting the Nation's Blood Supply. Not!" Campaign and video (Nov 30, 2010)
Hi friends: I hope you will help me get the word out on this grassroots campaign that aims to pressure the American Red Cross and U.S. government to finally start protecting the nation's blood supply so that no one else will get ME/CFS/XMRV from a blood transfustion. Please forward and post this below notice on your blog/website/facebook. Thanks! -- Best, Rivka

Great idea. Provocative video. All the details you need are in Rivka's post. Let's get to it!
 
C

Cloud

Guest
Thanks, all! This is good timing, if we hit up the Red Cross now. The Blood Advisory meeting is being held in mid-December. And they'll discuss XMRV there:

http://www.fda.gov/AdvisoryCommitte.../BloodProductsAdvisoryCommittee/ucm234882.htm

Well, I called the national Red Cross headquarters (Wash DC) and the person I spoke to had never heard of XMRV. I also called my state Red Cross office. Same thing.

Warmly,
Rivka
http://www.fda.gov/AdvisoryCommitte.../BloodProductsAdvisoryCommittee/ucm234884.htm
 

RivkaRivka

Senior Member
Messages
368
Likes
579
people are getting back to me with reponses from their emails sent to their local and state red cross offices. the red cross offices are saying that they *are* DEFERRING people with ME/CFS from donating blood. what the heck does that mean, i wonder? it appears to me to be a separate more strict policy than the U.S. gov't's policy of "discouraging" people with CFS from donating blood, right?
 

Otis

Señor Mumbler
Messages
1,117
Likes
117
Location
USA
I haven't see this posted yet - directly from the Red Cross.

http://www.redcross.org/portal/site...nnel=00a00628b1cde110VgnVCM10000089f0870aRCRD

At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS.

So bravo to Rivka and all those who wrote the Red Cross.

Hopefully the FDA will formalize this later in the month.
 

camas

Senior Member
Messages
701
Likes
234
Location
Oregon
urbantravels explains on another thread that 'indefinitely deferred' is the Red Cross euphemism for 'banned for life.'
 

urbantravels

disjecta membra
Messages
1,333
Likes
523
Location
Los Angeles, CA
Yes, "deferral" = "ban". In case there should be any confusion about that. This is the same "deferral" that applies to those with HIV. There isn't anything stronger than "deferral".

This is in fact a step beyond the AABB directive from June to "discourage" donations from those who had ever been diagnosed with ME/CFS. It was never very clear to me how "discouraging" donations was actually being implemented at the donation point.
 

RivkaRivka

Senior Member
Messages
368
Likes
579
I haven't see this posted yet - directly from the Red Cross.

http://www.redcross.org/portal/site...nnel=00a00628b1cde110VgnVCM10000089f0870aRCRD

At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS.

So bravo to Rivka and all those who wrote the Red Cross.

Hopefully the FDA will formalize this later in the month.
This is great that the Red Cross came out with this press release!

Praise for this success should likely go to those ME/CFS advocates who bombarded the Red Cross's Facebook page a few weeks back. (I just can't imagine that my recent video and the few recent emails sent to the Red Cross that resulted from the video -- though I have no idea how many were sent -- were what prompted the Red Cross to send out this press release. I think it was a culmination of efforts, most importantly from that Facebook campaign a few weeks ago. Bravo to those who did that campaign!

That said, MANY thanks to all who were/are inspired by my video to write the Red Cross about this. Don't stop now. The more they feel the pressure from us now, the more they'll pressure their colleagues at the Blood Advisory meeting (Dec 14-15th) to pay attention to these issues.
 

RivkaRivka

Senior Member
Messages
368
Likes
579
p.s. even if this "deferral" is old news, as some are stating on the ME/CFS Forums, the fact that the Red Cross *re-issued* the old news in a press release dated today is good news. the timing is right; right before the Blood Advisory meeting.

great job to bakercape, xmrv global action, and all the Red Cross facebook page activists!!!! i really think this success is due to them, as they started their efforts weeks/months ago.
 

urbantravels

disjecta membra
Messages
1,333
Likes
523
Location
Los Angeles, CA
No, it's new news - today's release is the first official announcement of this change in policy.

I'm sure the American Red Cross has been working on the decision for some time - and whatever poor Red Cross employee was put in charge of that Facebook questons thread probably had to desperately try to get in touch with someone higher up who could tell him/her what was going on with this XMRV thing. I wouldn't take any answers that were posted on that Facebook thread as an official statement by the Red Cross, probably just the result of some organizational mishmosh where someone said something they shouldn't have, officially, just yet. I am correct in recalling that the Facebook questions thread was later removed, yes?
 

RivkaRivka

Senior Member
Messages
368
Likes
579
just talked to the media dept at the red cross national headquarters. they can't "reach" the woman who wrote the document that put the deferral (ban) in place. she'd be the woman who would know the exact date the policy of deferral was started. ("it is a friday afternoon, and some people went home early," I was told.) but the person i spoke to said that "the deferral was put in place in october, that i did find out." and she promised to call me on monday with an exact date.
 

urbantravels

disjecta membra
Messages
1,333
Likes
523
Location
Los Angeles, CA
Oh, well now that's interesting. They did the Friday afternoon news dump and then went home. I envision a Monday morning with full voicemail boxes and lots of phones ringing...

They "officially" started deferring ME/CFS patients from donating in October and forgot to tell anybody? Something doesn't smell right.
 

RivkaRivka

Senior Member
Messages
368
Likes
579
everyone contact the media contacts they have!

i have already contacted (and sent the red cross press release to)

- Wall St Journal's Amy Marcus
- Washington Post's Ron Stein
- USA Today's Alison Young