Monday, October 20, 2014

Suggested Protest of the P2P

Note: I posted this in response to a discussion in the Facebook group, US Campaign for ME.  

UPDATE: As the deadline to post comments on the government website mentioned below has passed, feel free to use the sample comment provided as text for emails to the following. Make sure to keep copies of your sent emails.  


This group’s focus from the start has been to oppose the three US government initiatives (including the P2P) to redefine ME and change the direction of research and clinical guidelines. We have been told by the government that P2P is part of the official response to the October 2012 CFSAC recommendation to convene a stakeholder workshop (including experts, patients, and advocates) to reach a consensus for a case definition, starting with the 2003 Canadian Consensus Criteria. We continue to support the experts and the CCC, as updated by the ME ICC.

As founders and administrators, we propose that members consider using the tool AHRQ has given us, a place to comment (by 11:59 pm EST October 20), in much the same way we used the public comment spaces at the January IOM meeting -- to protest the process rather than comment on the substance of the draft report. 

Videos of those who protested at the IOM are part of a permanent public record on the IOM’s YouTube channel. Similarly, the AHRQ must publish all public comments on its official government website. Thus, those comments (unlike letters sent to NIH Director Collins and others) will be accessible to the public at large and can be easily shared with the press, members of Congress, and others who need to see the truth: 

There is widespread dissent to what the U.S. government is doing to ME! Others are commenting on the substance of the report. We must counter their voices!

A protest comment can be pasted in the "General Comments" section of the AHRQ form, the last blank box toward the bottom of the page. There is no need to enter anything in the other boxes designed for more formal submissions. Comments can be anonymous.

Don't forget your comment must be submitted by 11:59 pm EST on Monday, October 20!

Feel free to copy and paste the sample comment below (don't forget to enter the years you've been sick) or use it for inspiration.

Click here to get to the AHRQ comment website. 


I am writing to protest the entire P2P process, including the production of the draft evidence report. I have had ME for ___ years and am outraged at the US Department of Health & Human Services’ (HHS) pretense that P2P is responsive to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) October 2012 recommendation to convene a stakeholder workshop (including experts, patients, and advocates) to reach a consensus for a case definition useful for research, diagnosis, and treatment.

In no way is the P2P process responsive to this recommendation. NIH has not engaged or involved stakeholders in a substantive way. The Workshop panel consists of individuals with no expertise in ME or CFS. It ignores the subsequent letter to HHS by disease experts who have adopted the Canadian Case Definition for research, to be updated as needed. Instead, the focus of the draft report is "medically unexplained fatigue". 

By using evidence-based practice, the very research studies that could move the field forward are ignored. The report itself will unequivocally set back research and treatment and lead to continued harm to patients, quite possible worse than what has already been inflicted on people like me.

For these reasons, I object to the continuance of the P2P process, including publication of this report, its dissemination to the P2P panel, and its use for any other purposes.