Discussion in 'Action Alerts and Advocacy' started by judderwocky, Jun 30, 2010.
I don't know how this is done, but can the thread name be changed to include, "SIGN PETITION!" ? (Thanks for posting the petition link. I've signed.)
Woot ! ... ill try to change it ... i dont know if it will let me lol
I've worked for several non profits doing media, petitions, online campaigns and stuff... I worked for HRC, Planned Parenthood, and Equality Tennessee...
i wanted a petition that would do several things
1) show our mostly (male) elected officials that this disease is also connected to prostate cancer... they need to know this could affect them
2) show them there are studies backing us up - use this an opportunity to teach them about the disease
3) frame our desired action as a nutural continuation of scientific progress
4) connect our issue to general public health....
YES, someone please make this clear that this is a thread to SIGN THE PETITION to ALLOW FDA/NIH to PUBLISH THEIR PAPERS.
Done: add any further modifications to the title here and I'll make it so.
Judderwocky: suggest you edit your first post and copy the full text of the petition in there from the web page (from my following post).
XMRV: Allow Science to Progress
Targeting: The President of the United States, The U.S. Senate and The U.S. House of Representatives
Started by: Judson Wallace
I am writing today to request your action on a public health concern. Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. X-MRV has also been implicated by recent research in the development of aggressive prostate cancer. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of the NIH scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies are being WITHHELD, as the CDC was unable to duplicate the findings as well.
Tell the DHHS to allow the NIH and FDA to publish their papers. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed.
does it look ok now? it looks like the title has changed
im sorry... writting the petition was the last coherent thing i could do... i spent all night vomitting .... and the brain fog is starting to set in.
i made the worlds best meatball and alredo pasta last night... it took too much energy... and well... relapse central... anyway...i was angry and made the petition
I have worked in 4 different research settings... and I have a degree that had a lot of classes in ethics as core classes....
The way they are handling this is just flat out wrong
A big thank you for the petition, judderwocky. Wow, all this and great pasta, too. Amazing!
:Sign Good Job:
A lot of political organizations run on the belief that every time a person contacts them it represents the thinking of a thousand constituents... so each person that signs something like this actually has a big impact.... this is a sort of figure that ive heard thrown around countless times... im gonna keep lifting the goal on it as we get more signatures... thanks to everyone that has signed it already!!!
Next step will be contacting the health comittees in senate and health specifically.... if you know anybody that lives in any of those districts... have them sign the petition if you can
US Senate Committee On Health Education Labor and Pension, Subcommittee on Health
Democrats by Rank
Tom Harkin (IA)
Christopher Dodd (CT)
Barbara A. Mikulski (MD)
Jeff Bingaman (NM)
Patty Murray (WA)
Jack Reed (RI)
Bernard Sanders (I) (VT)
Sherrod Brown (OH)
Robert P. Casey, Jr. (PA)
Kay Hagan (NC)
Jeff Merkley (OR)
Al Franken (MN)
Michael Bennet (CO)
Republicans by Rank
Michael B. Enzi (WY)
Judd Gregg (NH)
Lamar Alexander (TN)
Richard Burr (NC)
Johnny Isakson (GA)
John McCain (AZ)
Orrin G. Hatch (UT)
Lisa Murkowski (AK)
Tom Coburn, M.D. (OK)
Pat Roberts (KS)
Energy and Commerce, Subcommittee on health:
John D. Dingell, MI John Shimkus, IL, Ranking Member1
Bart Gordon, TN Ralph M. Hall, TX
Anna G. Eshoo, CA Ed Whitfield, KY
Eliot L. Engel, NY John B. Shadegg, AZ
Gene Green, TX Roy Blunt, MO
Diana DeGette, CO Steve Buyer, IN
Lois Capps, CA, Vice Chair Joseph R. Pitts, PA
Jan Schakowsky, IL Mike Rogers, MI
Tammy Baldwin, WI Sue Wilkins Myrick, NC
Mike Ross, AR John Sullivan, OK2
Anthony D. Weiner, NY Tim Murphy, PA
Jim Matheson, UT Michael C. Burgess, TX
Jane Harman, CA Marsha Blackburn, TN
Charles A. Gonzalez, TX Phil Gingrey, GA
John Barrow, GA Joe Barton, TX (ex officio)
Donna M. Christensen, VI
Kathy Castor, FL
John P. Sarbanes, MD
Christopher S. Murphy, CT
Zachary T. Space, OH
Betty Sutton, OH
Bruce L. Braley, IA
Henry A. Waxman, CA (ex officio)
Great work Judderwocky! Thanks!
Even if sensations not unrelated to nausea were not common enough symptoms of CFS, they are more than appropriate reactions at this point.
It would be great to see healthy ethicists and journalists take up the story with equal dedication from here on.
It strikes me that as effectively the first major public act from government on XMRV, publicly stating that they are withholding peer-reviewed science produced by top experts in their own departments sends out a strong message of confirmation that at least some aspects of CFS research and XMRV research are being effectively suppressed. It's a surprisingly risky move in that sense. It tends to legitimise future questions as to what other information has been suppressed regarding this matter. It implies that scientific truth in this matter might be determined behind closed doors, by bureaucrats, which is a quite extraordinary statement. The only conceivable ethical justifications would be along the lines of knowledge necessitating the preparation of emergency measures (presumably globally) in preparation for a major public health announcement.
Governments of the world, and representatives of the World Health Organisation, ought to be asking the US president what the hell is going on with this. Could somebody please draft a question for the House of Commons, and try to find out if Clegg and Cameron are in the loop on this?
There is really no other way you can reasonably interpret this move other than as the suppression of scientific research, however it is spun, because the publication of a positive paper confirming the WPI findings would immediately transform the public debate on XMRV, regardless of the conclusions of the conflicting CDC paper. And the details of both those publications which have lain in press for...how long? A month or more?...these details could be used now by the researchers of the world to answer the pressing questions that the DHHS have taken it upon themselves to resolve in secret.
There is a legitimate scientific controversy over XMRV testing and various teams of researchers looking at different conditions have all been beset by problems - some find it, some don't. What the world so obviously needs now is more data, and fast - and it is criminally irresponsible to slow down that process. Allegations of crimes against humanity and of violations of human rights have been made on public record before in relation to the alleged suppression of scientific information regarding CFS, so it would seem most unwise for anyone to be seen to be withholding information at this time.
The clock is ticking as patients have already warned and the world is watching. 500m estimated infected if true, with uncurable and heritable genetic defects...boy are they gonna be angry with anyone caught lying or withholding information...
Suggested Guidelines for DHHS: Think for a minute. No more.
can somebody help me link on facebook??? i haven't used it in FOREVER
ok...i just posted it on a few places... but im running out of ideas
I couldn't find a message button for the WPI people... is there any profile admin anybody knows that would be willing to post this petition?
Just updated the petition to include these people as submitted by other users
1) National Institutes of Health (NIH)
Dr. Francis S. Collins, NIH Director firstname.lastname@example.org 301-496-2433
2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) email@example.com
3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
Thomas R. Frieden, MD, MPH firstname.lastname@example.org
Director, Centers for Disease Control and Prevention
Administrator, Agency for Toxic Substances and Disease Registry
Would it be possible to indicate in the petition that the term ME/CFS is used by patients over CFS because fatigue is not an accurate description of the disease?
This petition unfortunately only allows those in the US to participate. I'm wondering if there is one that the rest of us non US folks can participate in.
someone from portugal has already signed it... if you don't live in a Senate or House district , it will just send it to the president, and the heads of the NIH FDA and CDC.... also, I just left it at CFS ... i know some might not be happy about it... but frankly most senators are already going to be a bit confused by this... CFS seemed like the most recognizeable term and the problem is in petitions like this you have to catch their attention quickly... usually they shoot for 1-2 short paragraphs with very short sentences... and just a few catch phrases they will be familiar with.... i didn't at this stage want to confuse them with additional controversies already present in the history of this illness...
Well I wonder how on earth the person from Portugal managed to sign. If you don't select a State, it won't accept it and if you select Non US, it comes up saying 'You must live in the US to sign this petition'.
that is sooo weird.... ill look into it ... im sorry i don't have an answer for you,....
its supposed to just let you send the message to the Heads of the agencies if you don't live in states....
When I signed the petition, I didn't realize the text of the letter to be sent to the designated recipients was editable. It requires ones' name to be added under the closing "Thank you."
I wonder if others similarly brain fogged missed this also. Some clarification would be helpful. Is this a petition or just a template with standard text which may be edited or added to by the signer? This seems to be different from the usual online petition.
i think it automatically signs your name... if you add i it in it will just sign your name twice i think...
You can also try a Google Site Search
Separate names with a comma.