Tag Archives: recommendations

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

CFSAC Testimony May 2013

Posted on May 22, 2013 by Jennie Spotila

I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here.  What follows is the testimony I delivered by telephone this morning: My name is Jennifer Spotila, and I … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 18 Comments

What To Look For

Posted on May 20, 2013 by Jennie Spotila

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | Comments Off on What To Look For

CFSAC Input Template

Posted on May 10, 2013 by Jennie Spotila

If you subscribe to the CFS Advisory Committee email list, then you may have seen the preliminary agenda that went out last night. The High Priority recommendations list was not on it BUT we have confirmed with Dr. Nancy Lee … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 3 Comments

Why and How to CFSAC

Posted on May 9, 2013 by Jennie Spotila

I wrote an article for Phoenix Rising about a few things we can expect at the upcoming CFS Advisory Committee meeting on May 22-23rd. Today I want to focus on why you should participate, and how to do so. This … Continue reading →

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

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

Evidence Based at NIH

Posted on March 21, 2013 by Jennie Spotila

Last year, NIH said it was undertaking a process to identify a research case definition for ME/CFS, but individuals like me were unable to get any additional information about what NIH intended. Now additional information has been made public in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 13 Comments

News That Is Mostly Not

Posted on March 13, 2013 by Jennie Spotila

This week, the CFS Advisory Committee made two announcements that I think you will want to know about. First, the spring CFSAC meeting will be May 22-23rd in Washington, DC. There is no additional information about the agenda, beyond the … Continue reading →

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

Research Recommendations

Posted on March 12, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations See Part Four – Education and Training Recommendations Appropriately enough, the CSFAC has made more recommendations on research than … Continue reading →

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

Education and Training Recommendations

Posted on March 11, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations The CFSAC lists fourteen recommendations in this category, but I covered one recommendation on ICD-10-CM in the Care & … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | Comments Off on Education and Training Recommendations