Tag Archives: ME

#SaveOurScience

Posted on May 12, 2025 by Jennie Spotila

Science is under threat. There is no kinder, gentler way to say it. No matter what your politics or health beliefs are, this will hurt you. I join with ME activists everywhere to plead with Congress to Save Our Science. … Continue reading →

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

Naming

Posted on July 22, 2016 by Jennie Spotila

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading →

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

CFS Advisory Committee Meeting Outcomes

Posted on May 21, 2016 by Jennie Spotila

The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading →

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

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments