Monthly Archives: September 2013

The Statement of Work

Posted on September 30, 2013 by Jennie Spotila

I have obtained a copy of the Statement of Work (SOW) for the Institute of Medicine study on clinical diagnostic criteria for ME/CFS. I am making that document available to you in its entirety through this link. I am also … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , | 52 Comments

Trust

Posted on September 26, 2013 by Jennie Spotila

Can you trust someone if you think they don’t respect you? There is an abundance of mistrust and disrespect among all participants in the ME/CFS landscape. I think it’s important to talk about because these attitudes have a significant impact … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 31 Comments

The Experts

Posted on September 24, 2013 by Jennie Spotila

Developments came fast and furious last night. First, the CFIDS Association announced that it would not oppose the IOM contract, but would actively call for the IOM to choose a panel that matches the CFS Advisory Committee recommendation from October … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 31 Comments

Contract Signed

Posted on September 23, 2013 by Jennie Spotila

This message was sent out via the CFS Advisory Committee listserv this evening: We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month.  This … Continue reading →

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

Lips Are Sealed

Posted on September 21, 2013 by Jennie Spotila

Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting? Good question. You may recall that at the May 2013 CFSAC meeting, voting member Eileen Holderman alleged that she and two other members had been intimidated … Continue reading →

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

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