Tag Archives: testimony

Why You Should P2P

My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014. Registration for attending in … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , | 35 Comments

ME/CFS Mortality

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading

Posted in Research | Tagged , , , , , , , , , , , | 23 Comments

Parsing CFSAC

I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 17 Comments

Guest Post: CFSAC Testimony of Andrew Bokelman

Andrew Bokelman was scheduled to deliver public comment to the CFS Advisory Committee on June 17th and was the first telephone commenter. His call was terminated by the operator prior to his 3 minutes being up. After protest on Andrew’s … Continue reading

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

Guest Post: CFSAC Comments of Charmian Proskauer

Charmian delivered these comments at today’s CFS Advisory Committee meeting. She has kindly given me permission to publish them here in their entirety. My name is Charmian Proskauer, and I currently serve as President of the Massachusetts CFIDS/ME & FM … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , | 1 Comment

Comment for the June 2014 CFS Advisory Committee

These are the comments I delivered by telephone to the CFS Advisory Committee today. For the record, the operator told me that they were instructed to cut people off precisely at 3 minutes. Mary Dimmock and I wrote to Dr. … Continue reading

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

Guest Post: CFSAC Comments of Joe Landson

Joe Landson delivered these comments at the CFS Advisory Committee meeting today. He has kindly given me permission to post them in their entirety here. Testimony of Joseph D. Landson June 2014 Chronic Fatigue Syndrome Advisory Committee First, credit where … Continue reading

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

A Different CFSAC

It’s that time again: meaning it is time for another CFS Advisory Committee meeting. Due to the make up day in March, the meetings have fallen very close together. Presumably this spring meeting puts the calendar back on track (but … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , | Comments Off on A Different CFSAC

Yay, and Also Boo

Yay! The CFS Advisory Committee will meet on Tuesday, March 11th from 12-5pm. This is the makeup day for the meeting cancelled on December 10, 2013. Boo! This is another webinar, and one can only hope the technical aspects will … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 4 Comments

Accurate and Precise

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 55 Comments