Tag Archives: DHHS

On The Record

Posted on November 22, 2013 by Jennie Spotila

Public comment for the CFS Advisory Committee is due next Friday, November 29th. That’s not much time to prepare and submit comments, but I believe that you should if at all possible (instructions are here). Here’s why: CFSAC and HHS … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 26 Comments

FAQchecking

Posted on November 18, 2013 by Jennie Spotila

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 , , , , , , , , | 19 Comments

CFSAC Info

Posted on November 14, 2013 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away: December 10th and 11th. To help you prepare, I’ve collected basic information about the meeting. I’ll be posting more about what to watch for in the meeting soon. The … Continue reading →

Posted in Advocacy | Tagged , , , , | 4 Comments

IOM Process Check

Posted on November 4, 2013 by Jennie Spotila

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 , , , , , | 38 Comments

CFSAC Profile: Dr. Gary Kaplan

Posted on October 25, 2013 by Jennie Spotila

The CFS Advisory Committee announced via its listserv on October 23, 2013 that Dr. Gary Kaplan has been appointed to the Committee. Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 24 Comments

Don’t Lose Sight of CFSAC

Posted on October 22, 2013 by Jennie Spotila

The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 16 Comments

Exhibit A

Posted on October 17, 2013 by Jennie Spotila

I’ve been very critical of HHS and how they have handled communications and engagement with the ME/CFS patient community, and the fiasco surrounding the Institute of Medicine study is a sinkhole of terrible engagement. But if HHS and/or the IOM … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , | 8 Comments

Which Paddle?

Posted on October 11, 2013 by Jennie Spotila

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 , , , , , | 45 Comments

The Statement of Work

Posted on September 30, 2013 by Jennie Spotila

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 , , , , , | 52 Comments

Trust

Posted on September 26, 2013 by Jennie Spotila

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 , , , , , , , | 31 Comments