Tag Archives: DHHS

Rest In Power, CFSAC

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: “The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.” A sudden death under … Continue reading

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

Public Comment on Engaging People with ME

I delivered these comments via telephone today at the CFS Advisory Committee meeting: My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 6 Comments

NIH Time Warp

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading

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

The NIH Pilot Program: Wait and See

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , , , | 50 Comments

For Serious?

It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 39 Comments

CDC Website Update

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 34 Comments

Those CDC Documents

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now … Continue reading

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

CDC Hilarity

Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading

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

CFSAC: Second Verse, Same as the First

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading

Posted in Advocacy | Tagged , , , , , , | 19 Comments

CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , , , | 20 Comments