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Tag Archives: speaking out
CDC Website Update
In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, case definition, CBT, CDC, CFSAC, DHHS, exercise, fatigue, GET, government, guest post, IOM, medical education, PACE, pacing, politics, post-exertional malaise, recommendations, speaking out, treatment
34 Comments
Pediatric Primer Not For Prime Time
Guest post by Denise Lopez-Majano Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients. … Continue reading
Posted in Commentary
Tagged adolescent, case definition, coping, education, medical education, pediatric, physician, post-exertional malaise, primer, recommendations, severely ill, speaking out
41 Comments
NIH Attitudes Affect Policy: A Story In Two Parts
The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, activism, advocacy, anger, Centers of Excellence, funding, government, mental illness, NIH, occupy, politics, psychosocial, researchers, RFA, speaking out, stereotypes
45 Comments
CDC Hilarity
Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading
Posted in Advocacy
Tagged action, CDC, DHHS, FOIA, government, hilarious, IOM, politics, priorities, speaking out
21 Comments
CFSAC: Second Verse, Same as the First
Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading
Posted in Advocacy
Tagged accountability, action, CFSAC, DHHS, government, politics, speaking out
19 Comments
Bottom of the Ramp
In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading →