Search Results for: guidelines

Which Disease Is HHS Studying?

Posted on November 27, 2013 by Jennie Spotila

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 10 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

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 →

Posted in Advocacy | Tagged , , , , , | 7 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

Facts, Not Spin

Posted on July 29, 2013 by Jennie Spotila

I need to speak out about something, in part because I’m afraid no one else will. I’ve been following the comments posted in the FDA docket on ME/CFS, and I came across this comment from Dr. Judy Mikovits: During the … Continue reading →

Posted in Commentary | Tagged , , , , , | 12 Comments

CFSAC Testimony from Amy Squires

Posted on May 22, 2013 by Jennie Spotila

Amy Squires is my dear friend, and serves as Chairman of the Board of Directors of the CFIDS Association. She has given me permission to post the comments she made to the CFS Advisory Committee today. My name is Amy … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 2 Comments

Full Text CFSAC Recommendations

Posted on May 7, 2013 by Jennie Spotila

As I’ve reviewed elsewhere in great detail, the CFS Advisory Committee will be discussing which recommendations should be designated “high priority” at their meeting on May 22-23rd. We now have the opportunity to voice our own views about which recommendations … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 10 Comments

Care and Services Recommendations

Posted on March 8, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations Only ten recommendations are assigned to this category. See pages 12 – 15 of the Recommendations Chart (pdf link). Most relate to the categorization of CFS in … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 1 Comment

Highest Priority, Part One

Posted on January 28, 2013 by Jennie Spotila

Over the years, the CFS Advisory Committee has made dozens and dozens of recommendations to the Secretary for Health and Human Services. This month, the Committee posted a document entitled “High Priority Recommendations from CFSAC, January 2012” (pdf link) which … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , | 10 Comments

Puzzle Pieces

Posted on October 30, 2012 by Jennie Spotila

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 13 Comments