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Author Archives: Jennie Spotila
FDA Deadlines
Deadlines are coming fast and furious as we enter the home stretch before the FDA meeting on Drug Development for ME/CFS. Here are the key dates: APRIL 8TH: Deadline to register to attend the meeting in person – even if … Continue reading
Posted in Advocacy
Tagged drugs, FDA, government, occupy, politics, speaking out, testimony, treatment
Comments Off on FDA Deadlines
What FDA Wants
I think it’s clear what ME/CFS patients want to come out of the FDA’s Drug Development Workshop for CFS and ME. We want short, straight lines through the drug development landscape to FDA-approved treatments for our disease. But what does … Continue reading
Posted in Advocacy
Tagged drugs, FDA, government, occupy, PFDD, politics, speaking out, treatment
2 Comments
AAFP Follow Up
After the American Academy of Family Practitioners published an article on CFS in October 2012, Dr. Lucinda Bateman and I submitted a Letter to the Editor. Today, that letter was published and the full version is free online. There is … Continue reading
Posted in Commentary
Tagged AAFP, CBT, coping, exercise, GET, PACE, psychosocial, speaking out
1 Comment
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
Index of FDA Meeting Resources
One month to go until the FDA’s Drug Development Workshop for ME and CFS! There is a boatload of information that might be helpful to you in preparing for the meeting, even if you will only be watching online. I’ll … Continue reading
Posted in Advocacy
Tagged drugs, FDA, government, politics, speaking out, testimony, treatment
2 Comments
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 action, CFIDS Association, DHHS, drugs, FDA, government, speaking out, survey, testimony, treatment
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 case definition, CFIDS Association, DHHS, EbMW, government, NIH, politics, recommendations, researchers, speaking out
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 action, DHHS, drugs, FDA, government, occupy, politics, speaking out, testimony, treatment
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 action, biomarkers, DHHS, drugs, FDA, government, occupy, politics, speaking out, testimony, treatment
7 Comments
In Which I Rant at NPR
Two weeks ago, NPR published a story about the rise in Social Security disability claims. The bottom line of the story is that unemployed people are choosing to go on SSDI because they have conditions that prevent them from doing … Continue reading →