Monthly Archives: October 2013

Go Big or Go Home

This is Jen Brea after a 12 hour photo shoot for her film, Canary In A Coal Mine. I chose this picture of Jen because I’ve felt that way too. Every ME/CFS patients has felt this way: unable to stand, … Continue reading

Posted in Commentary | Tagged , , , | 13 Comments

CFSAC Profile: Dr. Gary Kaplan

The CFS Advisory Committee announced via its listserv on October 23, 2013 that Dr. Gary Kaplan has been appointed to the Committee. Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about … Continue reading

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

Don’t Lose Sight of CFSAC

The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, … Continue reading

Posted in Advocacy | Tagged , , , , , , | 16 Comments

Exhibit A

I’ve been very critical of HHS and how they have handled communications and engagement with the ME/CFS patient community, and the fiasco surrounding the Institute of Medicine study is a sinkhole of terrible engagement. But if HHS and/or the IOM … Continue reading

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

Which Paddle?

The IOM study is moving forward, and fast. I can confirm through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee. Those nominations are due today. I can also … Continue reading

Posted in Advocacy | Tagged , , , , , | 45 Comments

Convergence

In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 45 Comments

Training Wheels

When the news about the IOM contract first broke on August 27th, I was at my training for FDA Patient Representatives. Here is my much delayed write-up of that training. Every year, the FDA Patient Representative Program holds an in-person … Continue reading

Posted in Advocacy | Tagged , , , , , , | 18 Comments

19

Nineteen years ago today, I woke up with a sore throat. I ignored it, as I usually did with pain or illness. I was 26 years old, a “superstar” at my law firm (according to a performance review). I don’t … Continue reading

Posted in Occupying | Tagged , , , , , , , | 24 Comments