Monthly Archives: November 2014

A Big Helping of Defamation

I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , | 58 Comments

Another CFSAC Violation

Today I must report that once again, the CFS Advisory Committee violated federal law. This time, recommendations made by the Committee were illegally altered after the public meeting. The story of what happened, how I got it fixed (hopefully), and … Continue reading

Posted in Advocacy | Tagged , , , , , , , , | 32 Comments

CFSAC SNAFU

We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well. If … Continue reading

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

P2P: Not This Science

The P2P Workshop agenda focuses on a few broad categories of ME/CFS research: characteristics of the ME/CFS population; fostering innovative research; presentation and diagnosis in clinic; and, tools and measures for diagnosis and outcomes. Yet even with the late addition … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 14 Comments

P2P and Dr. Francis Collins

On January 3, 2014, just three days before the P2P Working Group meeting, a troubling series of emails was exchanged among NIH leadership. These emails show confusion at the leadership level about the ME/CFS P2P and IOM efforts, and a … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , | 26 Comments

P2P: The Disinvite List

UPDATED November 10 11, 2014 (see below) Last week, I focused on the problematic choice of several speakers for the P2P Workshop. Today, we’re going to focus on the speakers who were NOT invited to the Workshop. How do I … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , | 22 Comments

Delay

I have been laid low by an infection, and now by the antibiotics I’m taking to treat the infection. So it will be a few days before I post the next few entries on P2P – but stay tuned because … Continue reading

Posted in Occupying | Tagged , , , | 1 Comment