Tag Archives: government

CFSAC Specific Recommendations

Posted on March 7, 2013 by Jennie Spotila

See Part One – Tangled Web The CFSAC Specific category contains eleven recommendations regarding the Committee’s own operation. See pages 16 – 18 of the Recommendations Chart (pdf link). However, one recommendation concerns the case definition so I will cover … Continue reading →

Posted in Advocacy | Tagged , , , , , , | Comments Off on CFSAC Specific Recommendations

Tangled Web

Posted on March 6, 2013 by Jennie Spotila

The CFS Advisory Committee has hit the reset button on their High Priority Recommendations, which means we will have a chance at the next meeting to offer our input on the list. We can tell the CFSAC which of their … Continue reading →

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

No News is No News

Posted on March 4, 2013 by Jennie Spotila

The ME/CFS advocacy community has been hopping recently, with participation in the FDA meeting on Ampligen, my effort with Public Citizen, and Bob Miller’s hunger strike. We’ve been anticipating some sort of response from HHS, especially in the wake of … Continue reading →

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

Swift Response

Posted on March 1, 2013 by Jennie Spotila

I am pleased to share with you the response from HHS to Public Citizen’s letter to the Acting General Counsel about the CFSAC High Priority Recommendations. Public Citizen wrote to the Acting General Counsel on my behalf on February 14th, … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 11 Comments

Coverage

Posted on February 25, 2013 by Jennie Spotila

Thank you, everyone, for your comments on my Public Citizen story. I’ve heard from you on the blog, email, Facebook and Twitter. Thanks! We are still awaiting a formal response from the Acting General Counsel of HHS. I will share … Continue reading →

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

A Public Citizen

Posted on February 18, 2013 by Jennie Spotila

When I wrote about the CFS Advisory Committee’s creation of a High Priority Recommendations document and how their process violated their own charter, many people asked me “What can we do about it?” Today, I can finally tell you what … Continue reading →

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

Ampligen is Not AZT

Posted on February 11, 2013 by Jennie Spotila

In recent weeks, some ME/CFS advocates have been calling for NIH to conduct a clinical trial of Ampligen based on the reasoning that NIH conducted trials of AZT during the early years of the AIDS crisis. Unfortunately, this analogy does … Continue reading →

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

Highest Priority, Part Two

Posted on January 30, 2013 by Jennie Spotila

When I posted the other day about the CFS Advisory Committee’s list of High Priority Recommendations (pdf link), I said that I had done some digging and that what I found wasn’t pretty. To be blunt, what I found is … Continue reading →

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

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

NIH Collaboration

Posted on December 17, 2012 by Jennie Spotila

The news didn’t make much of a splash, but NIH recently issued a funding opportunity announcement that could benefit people with CFS. This purpose of this funding opportunity is to support “collaborative translational research projects” aimed at turning basic discoveries … Continue reading →

Posted in Research | Tagged , , , , , , , , | Comments Off on NIH Collaboration