Tag Archives: case definition

Don’t Stop!

Posted on September 4, 2013 by Jennie Spotila

As of 11:09 Eastern this morning, the sole source contract notice for the IOM case definition was updated to read: Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue … Continue reading →

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

Simple Action

Posted on September 4, 2013 by Jennie Spotila

I am not the only ME/CFS patient worried about what kind of case definition the Institute of Medicine might create for my disease. I don’t have anything against the IOM. To the contrary, I recognize that it is an institution … Continue reading →

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

If You Want Our Support

Posted on September 3, 2013 by Jennie Spotila

A week ago, ME/CFS patients found out about HHS’s plan to sole source a contract to the Institute of Medicine to create a consensus case definition for our disease when the sole source notice was published. Today, the CFS Advisory … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , | 5 Comments

Foreshadowing

Posted on September 3, 2013 by Jennie Spotila

The prospect of the Institute of Medicine creating a consensus case definition for ME/CFS scares me. It’s not free-floating anxiety or IOM-hatred. We have a current example of what this IOM contract might mean for ME/CFS and it’s not pretty. … Continue reading →

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

IOM On The Case

Posted on August 29, 2013 by Jennie Spotila

No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , | 5 Comments

Perplexed

Posted on June 3, 2013 by Jennie Spotila

The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading →

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

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

CFSAC Testimony of Dr. Joan Grobstein

Posted on November 8, 2012 by Jennie Spotila

Dr. Joan Grobstein delivered these comments to the CFS Advisory Committee at its October 3-4, 2012 meeting. She has kindly given me permission to publish them here. Hello.  I’m Dr. Joan Grobstein.  I’m a physician. My topic is responsibility. Recently … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 4 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