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Tag Archives: IOM
IOM Panel Announced
The Institute of Medicine has posted the provisional panel for public review and comment. I am working with a group of advocates to research all the members, seek out bias or conflicts of interest, and bring that information to you … Continue reading
FAQchecking
So We Had Some Questions . . . For the last few weeks, there’s been a rumor that HHS might actually respond to questions about the Institute of Medicine study. PANDORA urged HHS to address specific questions about the contract … Continue reading
Posted in Advocacy, Commentary
Tagged case definition, CFIDS Association, CFSAC, DHHS, government, IOM, politics, recommendations, speaking out
19 Comments
Quizzical
Update November 13, 2013: I have received a response from the CFIDS Association and have updated this post accordingly. Full comment from the Association below. My thanks to Carol Head, CEO of the CFIDS Association for her swift response to … Continue reading
Posted in Advocacy, Commentary
Tagged case definition, CCC, CFIDS Association, Fukuda, IOM, politics
15 Comments
IOM Conflict of Interest Policies
After my post on the basic process of an Institute of Medicine study, I received a number of questions in the comments and on Phoenix Rising about the definition of “conflict of interest” as distinguished from “bias.” I reached out … Continue reading
Posted in Advocacy
Tagged bias, case definition, conflict of interest, government, IOM, politics
54 Comments
IOM Process Check
Controversies continue to swirl around the Institute of Medicine’s study to create a clinical case definition for ME/CFS. I have new information to share, as well as important information about the process IOM uses for its studies. In preparing this … Continue reading
Posted in Advocacy
Tagged case definition, DHHS, government, IOM, politics, speaking out
38 Comments
Which Paddle?
The IOM study is moving forward, and fast. I can confirm through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee. Those nominations are due today. I can also … Continue reading
Posted in Advocacy
Tagged case definition, DHHS, government, IOM, politics, speaking out
45 Comments
Convergence
In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it … Continue reading
Posted in Advocacy
Tagged case definition, CFIDS Association, government, IOM, politics, recommendations, researchers, speaking out
45 Comments
The Statement of Work
I have obtained a copy of the Statement of Work (SOW) for the Institute of Medicine study on clinical diagnostic criteria for ME/CFS. I am making that document available to you in its entirety through this link. I am also … Continue reading
Posted in Advocacy, Commentary
Tagged case definition, DHHS, government, IOM, politics, speaking out
52 Comments
Trust
Can you trust someone if you think they don’t respect you? There is an abundance of mistrust and disrespect among all participants in the ME/CFS landscape. I think it’s important to talk about because these attitudes have a significant impact … Continue reading
Posted in Commentary
Tagged case definition, CFSAC, DHHS, distrust, government, IOM, politics, speaking out
31 Comments
Which Disease Is HHS Studying?
I am very pleased to share space today with Mary Dimmock. She has written this guest post about which disease HHS has asked IOM to define. Her conclusion will probably increase any concerns you have about the IOM study. Mary … Continue reading →