Monthly Archives: August 2012


I remember my mother and grandmother canning every year. My grandmother would put up jars of peach halves and applesauce, and my mother made strawberry jam. It always seemed like a silly waste of time to me, since you can … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , | 3 Comments

Preemptive Rest

I continue to wear my heart rate monitor every day, and generally listen to its alarm.  When it starts to sound, I sit down (although not instantaneously I will admit). And when I hit the part of the day where … Continue reading

Posted in Occupying | Tagged , , , , , , , , | 12 Comments

Another Day, Another Letter

Last month, I joined six advocates in sending a letter to Assistant Secretary Howard Koh regarding the recent vacancy on the CFSAC and a proposed change to the committee charter. Yesterday, I received the response below. While there are no … Continue reading

Posted in Advocacy | Tagged , , , , , | Comments Off on Another Day, Another Letter

Tale of Two Letters

Advocating for an adequate federal response to CFS usually feels like banging your head against a brick wall. Every once in awhile, you knock out a brick but it feels like so much more because you’ve been banging away for … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 4 Comments

New Life

I always wanted kids. When my husband and I got married, we thought three kids sounded like a good plan. Even though I got sick two months after we met, and was still sick when we married less than two … Continue reading

Posted in Occupying | Tagged , , , , | 15 Comments

Free Turkeys

A keystone of successful efforts to combat complex diseases like CFS has been lacking for thirty years: strategic coordination. Other illnesses, including autism and Alzheimer’s, are now benefiting from coordinated federal strategic plans. In the last year, the Department of … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , | 11 Comments

Passing of Dr. William Reeves

Unexpected news came today that Dr. William Reeves passed away last night. Dr. Reeves was head of the CDC’s CFS program from 1992 through 2010, and was a polarizing figure both inside and outside the agency. Others have chronicled the … Continue reading

Posted in Commentary | Tagged , , , , , , , | 24 Comments


I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings … Continue reading

Posted in Occupying | Tagged , , , , , , , , | 2 Comments