tag:blogger.com,1999:blog-1294356699705810200.post70157872163487490..comments2023-05-17T15:38:43.104-04:00Comments on Twenty Years and Counting: Suggested Protest of the P2PLiz Willowhttp://www.blogger.com/profile/11224204717888883351noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-1294356699705810200.post-91466780689991895262014-10-25T01:41:21.569-04:002014-10-25T01:41:21.569-04:00We differ in our approach after the P2P process co...We 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.Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-64719112041053349812014-10-25T01:39:27.745-04:002014-10-25T01:39:27.745-04:00Many of us have politely pointed out errors in fed...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.Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-245831891871859732014-10-25T01:36:32.219-04:002014-10-25T01:36:32.219-04:00Hear, hear!Hear, hear!Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-86364690333858977162014-10-25T01:33:00.761-04:002014-10-25T01:33:00.761-04:00Thank you, Anonymous, for participating in this ac...Thank you, Anonymous, for participating in this action and sharing your comment here! :)Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-27937306048270191142014-10-25T01:30:06.320-04:002014-10-25T01:30:06.320-04:00Thank you for posting your submission here, Anonym...Thank you for posting your submission here, Anonymous! :)<br />Liz Willowhttps://www.blogger.com/profile/11224204717888883351noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-38143838159094615712014-10-23T10:54:40.212-04:002014-10-23T10:54:40.212-04:00There is a third option if one must pidgeon-hole a...There 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. Anonymoushttps://www.blogger.com/profile/11896426207987791222noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-85121605982175639932014-10-20T20:25:20.978-04:002014-10-20T20:25:20.978-04:00FWIW, a substantive comment on the report should n...FWIW, 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.<br /><br />It'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). <br /><br />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. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-85401656140081327252014-10-20T17:30:38.167-04:002014-10-20T17:30:38.167-04:00I agree to this:
"There is widespread disse...I agree to this: <br /><br />"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!"<br /><br />and I hope deeply that the US government will listen.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-21497635812841458362014-10-20T17:13:40.723-04:002014-10-20T17:13:40.723-04:00I am writing to protest the entire P2P process, in...I 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.<br /><br />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". <br /><br />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.<br /><br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-47062021571598863292014-10-20T15:46:06.876-04:002014-10-20T15:46:06.876-04:00I am writing to protest the entire P2P process, in...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.<br /><br />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.<br />Instead, the focus of the draft report is "medically unexplained fatigue". <br /><br />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.<br /><br />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.Anonymousnoreply@blogger.com