Monthly Archives: August 2014


Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond. Dr. Lee was a lightning rod for criticism and controversy. During her … Continue reading

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


Will the CFS Advisory Committee be back this fall? Not many people seem to be paying attention to the fact that it could potentially disappear. The CFSAC is a chartered federal advisory committee, and by law it must be renewed … Continue reading

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

Limited Capacity

Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since … Continue reading

Posted in Occupying | Tagged , , , , | 25 Comments

La La La, I Can’t Hear You

On May 28th, Mary Dimmock and I sent NIH Director Dr. Francis Collins a 38 page packet outlining our concerns that the P2P Workshop will not advance the ME/CFS research field, and may even set it back. We finally got … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , | 19 Comments