Monthly Archives: September 2013

Still Waiting, Still Emailing

Posted on September 9, 2013 by Jennie Spotila

I thought I would have an update for you about the case definition efforts at DHHS and the ill-fated (for now) Institute of Medicine contract. I thought that I would have at least a few answers to the questions I … Continue reading →

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

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