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Category Archives: Commentary
Facts, Not Spin
I need to speak out about something, in part because I’m afraid no one else will. I’ve been following the comments posted in the FDA docket on ME/CFS, and I came across this comment from Dr. Judy Mikovits: During the … Continue reading
Posted in Commentary
Tagged Lipkin study, pathogen discovery, politics, researchers, speaking out, XMRV
12 Comments
Precision Is Required
Post updated June 28, 2013. See end of post for additional information from FDA. Five ME/CFS advocates recently sent a letter to DHHS, FDA and select members of Congress requesting that FDA convene a second meeting with ME/CFS patients “to … Continue reading
Posted in Advocacy, Commentary
Tagged action, drugs, FDA, government, occupy, politics, speaking out, treatment
20 Comments
Perplexed
The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading
Posted in Advocacy, Commentary
Tagged action, case definition, CDC, CFSAC, DHHS, funding, government, NIH, occupy, politics, priorities, recommendations, speaking out
24 Comments
Start as You Mean to Go On
I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the … Continue reading
Posted in Commentary
Tagged CFIDS Association, occupy, politics, priorities, researchers, treatment
11 Comments
I Heard the News Today, Oh Boy
What is there to say about something like the Boston Marathon bombing? There is no sane way to reconcile the gruesome images, the suffering and destruction with our need to believe that we are safe. We are privileged enough in … Continue reading
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
Posted in Commentary
Tagged coping, disability, economics, government, speaking out, SSDI, stereotypes
3 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
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
Answering Attacks
When I posted about the “truthiness” I saw in a comment by Dr. Mikovits, I expected criticism. I’ve heard from folks in the comments, on Twitter and Facebook, and by email. I think some of the points and questions raised … Continue reading →