holy fax machine, batman! this faxorama website looks GREAT. can you let us know how it works out for you as soon as you find out. i can see this making a HUGE impact on our efforts, if it works out for you. keep us posted!!!
Are you nuts? My understanding was that the Action was going to be for a week. I immediately asked Bob about that and when that was cleared up YESTERDAY - it was fixed immediately. - which Jace knows and decided to ignore
When I posted my last comment here, you had the headline spelled AKtion, and to date there has still not been a correction to the Emergency Action List email that Frank sent out on 10/4/10 at 21.08 BST. No I am not nuts. Thanks for the correction to your headline here, please ask Frank to correct his mistakes now, and not in a week's time, as he has said to me by PM.
We are all on the same side, or should be. Let's just all get on with doing whatever we can to get things moving for the millions who are sick.
ETA This thread is still titled AKtion in the board index on the forum page, and your blog still has the querky 'aktion' spelling on the blogs listing pane.
First, Thank you All for the Action you are taking. Emails, Confirmed Faxes and Phone calls are coming as well.
In one of Cort's earlier pieces, It was titled "Bringing The Heat" You are All doing just that!!! So let's keep the Heat On every day Especially up to the CFSAC meeting. I and many others are to give Testimony and will use "Your Heat" to deliver that Testimony.
Now Please Reach Out and Touch Someone ( NIH / NIAID)
Maybe telling them "There are 1-4 million US citizens who can't work and thus don't pay taxes because they are ill with a serious disease that the government is not funding for research. Please, FUND ME/CFS RESEARCH NOW SO WE CAN GET BETTER AND START TO PAY TAXES IN THIS DEEP RECESSION."[/B]
"IF I WASN'T IN BED SERIOUSLY ILL FOR (X number of) YEARS I WOULD BE OUT WORKING AND PAYING TAXES. HELP ME GET OUT OF BED BY FUNDING ME/CFS RESEARCH SO I CAN GIVE YOU MY MONEY AND BE A PRODUCTIVE MEMEBER OF THIS GREAT SOCIETY ONCE AGAIN"
sent my emails today, but couldnt get the faxorama to go through even with a different email addy, perhaps it will work later if it goes by a 24 hour time frame rather then daily. Any others have their fax go through or not go through?
FAXes tend to carry more weight than emails, so I plan to try Faxorama tomorrow. If I run into problems I'll let you know, Glenp. It wouldn't surprise me if one has to wait 24 hours if they're giving the service away for free.
For those who want to contact HHS Secretary Sebelius,, here's all her contact info:
For those wanting to add HHS Secretary Kathleen Sebelius, her contact info is:
i'm still sending my emails in every day. yesterday i called instead! it was fun. i got each director's secretary. i insisted on leaving a message at each of their offices, even tho they told me to talk to the "communications" office instead. and THEN i talked to the communications office also, and left a message there, too.
i asked the staff to write down my specific question... "What have you done for ME/CFS today? Patients and their families are waiting."
Fauci's office said i was the first to call with this action campaign (i asked). ever! so folks, please call, too. it is easy and it wastes their time, which means they are forced to pay attention to us, which means that if enough of us call, their secretaries have to say to the director, "1 hour of my day was spent answering these annoying calls about CFS."
and that means we are on the director's radar screen!!!!! which is our goal!
so call, everyone!!! AND FAX.
like others, i'm going to try Faxorama, too. heard that it works really well from a few patients. and faxing seems so much better than an email, as an email can be easily dismissed.
SO FAXING SEEMS KEY TO OUR DISRUPTION CAMPAIGN!
p.s. when i called collins' office, they told me he had gotten a lot of our calls!!!!
Are you comfortable knowing that you spend $3 a year on a disease that causes 25% disability rates. Don't you feel you have a responsibility for all ill Americans? Not just those you'd like to research?
What have you done for ME/CFS today? I million ignored patients and their families are waiting.