Category Archives: Advocacy

Pedal to the Metal

Posted on September 20, 2013 by Jennie Spotila

I feel like an engine that has been gunning too long. I’m revving revving revving and I can smell something burning and a gear is about to blow. The rest of my life is being neglected. I haven’t been able … Continue reading →

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

To The Healthies

Posted on September 19, 2013 by Jennie Spotila

We need all the help we can get right now! HHS is bound and determined to sign the IOM contract by September 30th. Advocates are working like mad to stop it. So in addition to sending my own emails to … Continue reading →

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

Insult, Meet Injury

Posted on September 17, 2013 by Jennie Spotila

Did you think that your efforts to tell HHS to freeze the IOM contract to create a clinical definition for ME/CFS were successful? Did you have the impression that your government would listen to your concerns? Join me in mourning … Continue reading →

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

Cut Back or Cut Out?

Posted on September 16, 2013 by Jennie Spotila

Last week, the CFS Advisory Committee announced via its email listserv that the fall meeting will be held on November 12th and 13th. Advocates were shocked to learn that the meeting will be held from 12pm to 5pm each of … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , | 9 Comments

Opportunity Lost

Posted on September 10, 2013 by Jennie Spotila

The CDC hosted a conference call for ME/CFS patients and advocates today. The highlight of the call was a presentation from Dr. Ian Lipkin about his pathogen and immunology work in ME/CFS. But we received an important update on the … Continue reading →

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

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