George
waitin' fer rabbits
- Messages
- 853
- Location
- South Texas
I'm trying to put together a little Dust up to let the BWG/NIH know that communication the key to their peace of mind as well as ours. I also wanted to make it easy-peasy.
I have e mail addresses for most of the BWG list and a couple of sample e-mails. The hope is you copy and paste one of the e-mails and the addresses that you want to send to and then paste, hit send and you are done for the day! easy-peasy.
The hardest part will be making sure you have a unique "subject" line each time so that we don't end up in the Spam bin. (big grins)
NOTE :As you might notice I'm not the most passionate person in the world and tend to be a wee bit on the analytical and dry side so any one who like to post a more passionate take on this please do. So if others have e-mail forms that they want to share that would be great. Also, I'm not the leadership type so anybody who wants to jump in and take over feel free (grins)
Repeat daily until we get our results. (big grins)
Copy and paste one from here (or your own if you want. It can be as little as one line)
_______________________________________________________________________
The dry one but it says what want, to who we want it given and when we want it.
A little less formal
_______________________________________________________________________
If we get enough people to send e-mails daily until they respond then we will jam up their mail boxes. (not nice but not a horrible thing either) The IT people will yell and that should get their attention. Hopefully it will not only get them to release the information but maybe get them thinking about putting together some kind of patient/NIH communication together. Make their lives a lot easier in the long run. (grins)
______________________________________________________________________
Below is a list of e-mail address of the people involved who need to open lines of communication with our patient community. You can choose to send a daily e-mail to all of them or some of them or even none. (grins) But I'm really hoping that you will send to all on a daily basis, making sure you have a unique subject line each day so ya don't get tossed in the spam bin!
Please be sure to copy phase2reportnow@gmail.com so George can keep tabs on the campaign.
Kathleen Sebelius Francis Collins Anthony Fauci Dennis Mangan
BWG members
NHLBI - Simone Glynn - Chair HHS - Jerry Holmberg - Co-chair NIH - Harvey Alter ABC - Celso Bianco CDC - William Bower BSRI - Michael Busch ARC - Roger Dodd FDA - Jay Epstein FDA - Diane Gubernot NIH - Eleanor Hanna CDC- Michael Hendry MVRBC - Louis Katz AABB - Steven Kleinman CDC - Stephan Monroe NCI - Francis Ruscetti ARC - Susan Stramer BSRI - Leslie Tobler CFIDS - Suzanne Vernon ?????
I have e mail addresses for most of the BWG list and a couple of sample e-mails. The hope is you copy and paste one of the e-mails and the addresses that you want to send to and then paste, hit send and you are done for the day! easy-peasy.
The hardest part will be making sure you have a unique "subject" line each time so that we don't end up in the Spam bin. (big grins)
NOTE :As you might notice I'm not the most passionate person in the world and tend to be a wee bit on the analytical and dry side so any one who like to post a more passionate take on this please do. So if others have e-mail forms that they want to share that would be great. Also, I'm not the leadership type so anybody who wants to jump in and take over feel free (grins)
Repeat daily until we get our results. (big grins)
Copy and paste one from here (or your own if you want. It can be as little as one line)
_______________________________________________________________________
The dry one but it says what want, to who we want it given and when we want it.
To the Members of the NIH Blood Working Group
From the ME/CFS community
RE: Phase II trial results
The members of the patient community would like to request of the NIH and the Blood Working Group that the results of the Phase II trial be released to the patient population either through one of the many advocacy groups or to members of our internet media population no later than December 3rd.
The results of this trial are vital to the understanding of research being conducted at this time. Our community can not judge the validity of current work without it. The ME/CFS community has struggled for years and we are now asking to be informed and for the NIH Trans-working group and the Blood Working Group to provide important information and transparency to the patient community in a timely manner.
Opening good lines of communication with the patient community can keep things running smoothly in the future.
Signed
A little less formal
Dear Blood Working Group Member
Your work is of vital importance to me as a patient. I have spent years educating myself in an effort to work with uncooperative doctors, to educate family and friends and to help myself. I need be able to understand the research that is being done right now and I need your help to do this. Please, release the results of the Phase II trials recently completed so that I can validate research that is being published regarding XMRV.
The NIH seems to be taking the ME/CFS community to heart for the first time in decades and I would challenge your agency to open the lines of communication and to open them wide. Keep us informed of the results of the trials and the working of the NIH in regards to ME/CFS and lets build a working relationship now and in the future.
I am requesting the information from the Phase II trials be released to an advocacy group, or to the community media no later than Dec. 3, 2010.
God Bless and Happy Holidays
_______________________________________________________________________
If we get enough people to send e-mails daily until they respond then we will jam up their mail boxes. (not nice but not a horrible thing either) The IT people will yell and that should get their attention. Hopefully it will not only get them to release the information but maybe get them thinking about putting together some kind of patient/NIH communication together. Make their lives a lot easier in the long run. (grins)
______________________________________________________________________
Below is a list of e-mail address of the people involved who need to open lines of communication with our patient community. You can choose to send a daily e-mail to all of them or some of them or even none. (grins) But I'm really hoping that you will send to all on a daily basis, making sure you have a unique subject line each day so ya don't get tossed in the spam bin!
Please be sure to copy phase2reportnow@gmail.com so George can keep tabs on the campaign.
Kathleen Sebelius Francis Collins Anthony Fauci Dennis Mangan
BWG members
NHLBI - Simone Glynn - Chair HHS - Jerry Holmberg - Co-chair NIH - Harvey Alter ABC - Celso Bianco CDC - William Bower BSRI - Michael Busch ARC - Roger Dodd FDA - Jay Epstein FDA - Diane Gubernot NIH - Eleanor Hanna CDC- Michael Hendry MVRBC - Louis Katz AABB - Steven Kleinman CDC - Stephan Monroe NCI - Francis Ruscetti ARC - Susan Stramer BSRI - Leslie Tobler CFIDS - Suzanne Vernon ?????