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.
Sylvia.Burwell@hhs.gov
Francis.Collins@nih.hhs.gov
Susan.Maier@nih.hhs.gov
Wanda.Jones@hhs.gov
David.Murray2@nih.hhs.gov
SUGGESTED PROTEST OF THE P2P
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.
SAMPLE COMMENT:
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.
I am writing to protest the entire P2P process, including the production of this report. I have had ME for 6+ 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.
ReplyDeleteIn 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.
Thank you for posting your submission here, Anonymous! :)
DeleteI am writing to protest the entire P2P process, including the production of this report. I have had ME for 4 and a half 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.
ReplyDeleteIn 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.
Thank you, Anonymous, for participating in this action and sharing your comment here! :)
DeleteI agree to this:
ReplyDelete"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!"
and I hope deeply that the US government will listen.
Hear, hear!
DeleteFWIW, a substantive comment on the report should not be taken as disagreement with your points here that the process is rigged, it is not a respectful response to "involve the experts and CFSAC and start with CCC", and it is more than likely that the final report will be shabby (the draft report certainly is). Besides which, relying on people outside the field is a nonstandard and disrespectuful way to manage case definitions in any case.
ReplyDeleteIt's just that to some people, it makes most sense to politely point out the errors, give them a chance to correct them, and _then_ tell them off if they are unable to take action on constructive criticism. That includes the TOO (Task Order Officer) and whoever she reports to at DHHS, as it seems they would have to be involved in changing the parameters of what the report covers, which is required to remove bias (just for starters).
That being said, it seems reasonable that other people/patient advocates will find the relationship with the government so broken that they are ready to jump straight to the telling them off part. Things have been broken for a long time.
Many of us have politely pointed out errors in federal policy toward ME, with no significant impact. Substantive and constructive criticism has been ignored. After 30 years of government malfeasance, I think it's time to change tactics.
DeleteThere is a third option if one must pidgeon-hole advocates as either those who protest or those who engage with criticism, and that is those of us who first protested but once it became apparent that the period for protesting had passed, and the P2P process was definitely underway with NO possibility of it being pulled,THEN we began to take action to constructivey criticize. I strongly feel that if patients are going to take any action at all we would likely beneft most by attacking from both angles, not one or the other. As for politeness vs telling someone off, there is also a middle ground here. It is most effective to calmly, politely, and factually "tell someone off" rather than to lose your own cool and not be heard at all. As a patient population we are mostly unable to protest in person, and getting angry on social media or even in letters has also not proven to have a significant impact. Constructive letters to our legislators has had some benefit. All I know is that we can't give up, and we don't gain by criticising one another.
ReplyDeleteWe differ in our approach after the P2P process continued despite our protests. I believe we are attacking from different angles, as you suggest. As to engaging with legislators, I'm all for that. My very first blog post highlighted the need for a Congressional investigation.
Delete