Tag Archives: DHHS

Full Text CFSAC Recommendations

As I’ve reviewed elsewhere in great detail, the CFS Advisory Committee will be discussing which recommendations should be designated “high priority” at their meeting on May 22-23rd. We now have the opportunity to voice our own views about which recommendations … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 10 Comments

FDA Meeting Materials

The FDA Drug Development Workshop for ME and CFS is finally here!!! I will be speaking on a panel at the meeting on Friday, and am in frantic preparation mode. I’ve gathered the pertinent materials together in one post to … Continue reading

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

Vincent Departs

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading

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

Clarity on Comment

As I said when the FDA formally announced the commenting process for the Drug Development Workshop, the process will be very different from what we’re used to from CFS Advisory Committee meetings. At the CFSAC, we sign up for a … Continue reading

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

Two Surveys, Two Opportunities

In addition to all the ways you can participate in and comment on the upcoming FDA Drug Development for ME/CFS Workshop, you can also participate in two surveys that will collect data for presentation at the Workshop. The CFIDS Association … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , | 3 Comments

Evidence Based at NIH

Last year, NIH said it was undertaking a process to identify a research case definition for ME/CFS, but individuals like me were unable to get any additional information about what NIH intended. Now additional information has been made public in … Continue reading

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

Showcase

The upcoming FDA Drug Development Workshop for ME/CFS will be a showcase for our disease and our patient community. We must prepare now to bring our A game on April 25th-26th. FDA first announced this workshop in the summer of … Continue reading

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

Quick Announcement

Finally (!) I am able to share the news that I’ve been invited to serve on a panel at the upcoming FDA Drug Development for ME/CFS Workshop. I’ve wanted to announce this for awhile, but panelists were asked not to … Continue reading

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

Tell It To The FDA

The much anticipated FDA meeting on drug development for ME/CFS on April 25-26th is fast approaching, and your participation is needed! There is a great deal of time set aside for patient input, but the process will work very differently … Continue reading

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

News That Is Mostly Not

This week, the CFS Advisory Committee made two announcements that I think you will want to know about. First, the spring CFSAC meeting will be May 22-23rd in Washington, DC. There is no additional information about the agenda, beyond the … Continue reading

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