• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

News Report on Blood Ban & CFS...

dannybex

dannybex

Senior Member
Messages
3,564
Location
Seattle
Not sure if this has been posted, but wanted to let people know that our Seattle tv news station just ran a story on the local blood banks decision to ban CFS patients from donating blood:

http://www.king5.com/health/Blood-C...from-Chronic-Fatigue-Sufferers-111698789.html

I hope you'll please take a moment to thank the reporter and the station for running the story. Any news relating to CFS/ME is good news. This station is really great, but I'm still in shock that it actually ran, and it ran near the top of the newcast. :)

NEWSFLASH: It was just picked up by MSNBC:

http://today.msnbc.msn.com/id/40613..._wa/?fb_ref=story_text&fb_source=home_oneline
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
dannybex said:
Not sure if this has been posted, but wanted to let people know that our Seattle tv news station just ran a story on the local blood banks decision to ban CFS patients from donating blood:

http://www.king5.com/health/Blood-C...from-Chronic-Fatigue-Sufferers-111698789.html

I hope you'll please take a moment to thank the reporter and the station for running the story. Any news relating to CFS/ME is good news. This station is really great, but I'm still in shock that it actually ran, and it ran near the top of the newcast. :)
Click to expand...

I recommend we all click on the links so these media sites see they get traffic if they cover this kind of story. It's an indication to them to keep going.

There are some great comments on there already. Here's one:

Omg. HALTS donations?! How long has this been in the blood supply? This is really freaky! I did a search on google and they're saying it causes all kinds of weird big diseases - and they say its called "XXMRV Associated Neuroimmune Disease." that's like HIV right? And a bigger question - if the U.S./Europe is already reporting that it's worried about the blood supply, why arn't other major networks covering the story? This is the first I had heard of it on a television network! I am really freaked out!
Click to expand...
 
talkingfox

talkingfox

Senior Member
Messages
230
Location
Olympia, wa
Hi. that's me on the story.
A few points of interest that WEREn't highlighted:

The Guy from PSBB is the next prez. of teh AABB
Their policy of BANNING donations from CFS patients wasn't implemented until AFTER talking to the reporters.
As of Monday the week the story ran, the PSBB support staff hadn't even HEARD of XMRV (we have a paper trail on that one)

What this proves is that local action can make a difference in policy. No one in a position of authority likes to be put under the spotlight like that...

Have you talked to your regional /local bloodbank today? If you e-mail , keep copies of everything. It could be useful :)
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
talkingfox said:
Hi. that's me on the story.
Click to expand...

Congratulations! You were great - some really good quotes there. I was really impressed by how seriously they were taking it in the broadcast.

We should email and thank the producer (?) Tonya Mosley: tmosley[at]king5.com. I just sent a short email thanking her.

When we did this before on a Nevada radio station show about XMRV, they did indeed cover it again because of the huge response. It's well worth doing.
 
You must log in or register to reply here.