catly
Senior Member
- Messages
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- Location
- outside of NYC
I'm not sure if this was already posted but I think it should have it's own thread.
Mary Kindel and the ME Advocay Group have created a simple 1 click letter that anyone in the US (for now) can use to protest the P2P.
You can use the letter as is, or modify it as you see fit.
This is a really easy way to get a letter to Secretary Burwell.
From the ME Advocay Site:
Tell Secretary Burwell To Stop The P2P!
POSTED BY MARY A. KINDEL 25.60SC ON OCTOBER 21, 2014
Use our easy One Click app to tell Sylvia Burwell, Secretary of the Department of Health and Human Services to stop the P2P workshop for ME/CFS. The outcome of workshop will negatively affect ME/CFS patients for decades to come.
You may edit the letter to personalize it. Expires December 15, 2014, so act now!
If you can't see the letter, click on the title of this post to get to the full blog post.
After you send the letter, please share it widely on message boards, social media and email.
We have found out that HHS is monitoring our online posts and the media, so make HHS sweat by sharing, liking and commenting!
If you live outside the US
Sorry, the app will work for US participants only at this time. I'm working with the developer to hopefully fix this.
As an alternative, you can copy the letter and send it via your email using these addresses:
Sylvia Burwell, Secretary of HHS Sylvia.Burwell@hhs.gov
Dr. Francis Collins, Director of NIH Francis.Collins@nih.hhs.gov
Dr. Richard Kronick, Director AHRQ richard.kronick@ahrq.hhs.gov
Dr. Thomas Frieden, Director of CDC Tomfrieden@cdc.gov
Dr. Wanda Jones, Acting Assistant Secretary for Health, HHS Wanda.Jones@hhs.gov
Elizabeth R. Unger, Branch Chief at CDC elizabeth.unger@cdc.hhs.gov
Susan Maier, Deputy Director ORWH Susan.Maier@nih.hhs.gov
And here is a copy of the letter:
Secretary Burwell,
I am one of the multitudes of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) patients, advocates and stakeholders who is deeply concerned by the NIH Pathways to Prevention Workshop for ME/CFS (P2P). The AHRQ Draft Report was posted September, 2014, and it’s as bad as I thought it would be.
I have not sent comments to the AHRQ comment address on purpose, as I am boycotting participation in the process. This message is my protest against the P2P workshop.
The P2P is unscientific as it does not include any ME/CFS experts. The jury model is ludicrous for this application. They are not listening to stakeholders in any substantive way. In short, the entire process is set up to fail. The results of the P2P will harm ME/CFS patients greatly for decades to come.
I demand that you stop the P2P process now. I demand that you adopt the Canadian Consensus Criteria definition for ME/CFS as originally requested by our expert clinicians and researchers in September, 2013. I demand that you restore ME/CFS research funding wasted by conducting the P2P.
cc:
Dr. Francis Collins, Director of NIH
Dr. Richard Kronick, Director AHRQ
Dr. Thomas Frieden, Director of CDC
Dr. Wanda Jones, Acting Assistant Secretary for Health, HHS
Elizabeth R. Unger, Branch Chief at CDC
Susan Maier, Deputy Director ORWH
Senate - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
House - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
http://www.meadvocacy.org/tell_secr...eboard&utm_medium=email&utm_source=meadvocacy
Mary Kindel and the ME Advocay Group have created a simple 1 click letter that anyone in the US (for now) can use to protest the P2P.
You can use the letter as is, or modify it as you see fit.
This is a really easy way to get a letter to Secretary Burwell.
From the ME Advocay Site:
Tell Secretary Burwell To Stop The P2P!
POSTED BY MARY A. KINDEL 25.60SC ON OCTOBER 21, 2014
Use our easy One Click app to tell Sylvia Burwell, Secretary of the Department of Health and Human Services to stop the P2P workshop for ME/CFS. The outcome of workshop will negatively affect ME/CFS patients for decades to come.
You may edit the letter to personalize it. Expires December 15, 2014, so act now!
If you can't see the letter, click on the title of this post to get to the full blog post.
After you send the letter, please share it widely on message boards, social media and email.
We have found out that HHS is monitoring our online posts and the media, so make HHS sweat by sharing, liking and commenting!
If you live outside the US
Sorry, the app will work for US participants only at this time. I'm working with the developer to hopefully fix this.
As an alternative, you can copy the letter and send it via your email using these addresses:
Sylvia Burwell, Secretary of HHS Sylvia.Burwell@hhs.gov
Dr. Francis Collins, Director of NIH Francis.Collins@nih.hhs.gov
Dr. Richard Kronick, Director AHRQ richard.kronick@ahrq.hhs.gov
Dr. Thomas Frieden, Director of CDC Tomfrieden@cdc.gov
Dr. Wanda Jones, Acting Assistant Secretary for Health, HHS Wanda.Jones@hhs.gov
Elizabeth R. Unger, Branch Chief at CDC elizabeth.unger@cdc.hhs.gov
Susan Maier, Deputy Director ORWH Susan.Maier@nih.hhs.gov
And here is a copy of the letter:
Secretary Burwell,
I am one of the multitudes of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) patients, advocates and stakeholders who is deeply concerned by the NIH Pathways to Prevention Workshop for ME/CFS (P2P). The AHRQ Draft Report was posted September, 2014, and it’s as bad as I thought it would be.
I have not sent comments to the AHRQ comment address on purpose, as I am boycotting participation in the process. This message is my protest against the P2P workshop.
The P2P is unscientific as it does not include any ME/CFS experts. The jury model is ludicrous for this application. They are not listening to stakeholders in any substantive way. In short, the entire process is set up to fail. The results of the P2P will harm ME/CFS patients greatly for decades to come.
I demand that you stop the P2P process now. I demand that you adopt the Canadian Consensus Criteria definition for ME/CFS as originally requested by our expert clinicians and researchers in September, 2013. I demand that you restore ME/CFS research funding wasted by conducting the P2P.
cc:
Dr. Francis Collins, Director of NIH
Dr. Richard Kronick, Director AHRQ
Dr. Thomas Frieden, Director of CDC
Dr. Wanda Jones, Acting Assistant Secretary for Health, HHS
Elizabeth R. Unger, Branch Chief at CDC
Susan Maier, Deputy Director ORWH
Senate - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
House - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
http://www.meadvocacy.org/tell_secr...eboard&utm_medium=email&utm_source=meadvocacy
