Tag Archives: CFSAC

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

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

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

The Experts

Posted on September 24, 2013 by Jennie Spotila

Developments came fast and furious last night. First, the CFIDS Association announced that it would not oppose the IOM contract, but would actively call for the IOM to choose a panel that matches the CFS Advisory Committee recommendation from October … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 31 Comments

Contract Signed

Posted on September 23, 2013 by Jennie Spotila

This message was sent out via the CFS Advisory Committee listserv this evening: We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month.  This … Continue reading →

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Lips Are Sealed

Posted on September 21, 2013 by Jennie Spotila

Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting? Good question. You may recall that at the May 2013 CFSAC meeting, voting member Eileen Holderman alleged that she and two other members had been intimidated … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 12 Comments

Insult, Meet Injury

Posted on September 17, 2013 by Jennie Spotila

Did you think that your efforts to tell HHS to freeze the IOM contract to create a clinical definition for ME/CFS were successful? Did you have the impression that your government would listen to your concerns? Join me in mourning … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 21 Comments

Cut Back or Cut Out?

Posted on September 16, 2013 by Jennie Spotila

Last week, the CFS Advisory Committee announced via its email listserv that the fall meeting will be held on November 12th and 13th. Advocates were shocked to learn that the meeting will be held from 12pm to 5pm each of … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , | 9 Comments